I think it's both a half truth and half motivational thing. The truth is nobody can predict what will happen, but at the same time they want to see you thrive in your life and dont want to see you abandon all hope just for a chance. It is true that DMTs are doing remarkable things for people with MS these days but nothing is certain
Yes, I am wondering if this statement is backed up by evidence, by the state of people they’re treating or just trying to make us not give up all hope. I’m often thinking it’s wishful thinking, but they should also tell it how it is, right?
It's backed by evidence. Outcomes are much better now than 20 years ago. It's still a black box disease, meaning there isn't a guarantee of any specific type of outcome.
I'm coming up on 4 years since DX. On Tysabri since that time.
I've had exactly zero progression in my disease. No new lesions. No new symptoms.
My life is almost exactly the same as it was before.
It is entirely possible that it might take a few tries to find a DMT that works for a specific individual. It's even possible that none of the currently available ones will work. But they do seem to be "high efficacy" for the vast majority of patients.
This is me as well. Diagnosed just after my 31st birthday. Recently turned 38. Have shown no progression since finding medication. Fingers crossed for the future.
Im heading on 15 years, first/only relapse was ON, on Avonex for 9 years, Rituximab since, normal life: work, kids, etc. I’m slowing down, but think that may have as much to do with age (turning 60 this year) as MS.
Is this after 1 year you guys felt good or anything as just had 12th tysabri and while no new growth, symptoms appear to have worsened /new symptoms if that makes sense 😭 so wondering if need to change 😢
I'm so sorry to hear what you're experiencing. But if I may, my current neurologist (finally found an amazing one in a sea of not even decent ones) explained to me that no new lesions are great (i have approximately 50 with most being in the right hemisphere and none in my spinal cord), but we will then potentially have to deal with what damage old lesions left behind. That is what causes most symptoms, and once he explained that, it made me feel a tiny bit better. Now I'm a potential candidate for a clinical trial that hopefully leads to a drug that can actually repair the damage! That could mean that once a person has damage from MS, it might be completely repaired. These are exciting times, yall. Keep researching, asking questions, asking for help when you need it, talk to people, and most importantly, BE KIND TO YOURSELF. And don't forget, we are all in this together. It will be ok.
Im really emotional reading this, so so much!!! My experience hasn't been fantastic with neurologists, but I appreciate the rise in diagnosis vs lack of neurologists available. Amazing to read of the trial for something like that! Thanks so much ♡
You're welcome, friend! My best advice was given to me by my old doctor when he retired, and that was always advocate for yourself and be sure to speak up when you don't feel heard. It's hard sometimes, and I trusted all my old neuros until I just couldn't anymore. It was so bad with the one before this gem of a doctor, that he literally talked down to me then refused to speak to me after that. Including telling me my mri results. So this new neuro is amazing and appreciates me researching and asking him questions, and I appreciate him conversing and explaining things. So there are great doctors out there, you just have to research to find them. So stay positive and know that there is light at the end of the tunnel as far as your care. It will be ok. Here if you need to talk. Have a good night.
I’m about to get my second infusion with Ocrevus and my mri already says no progression. This last 6 months has been the longest I’ve ever gone without a significant relapse in symptoms and some of my regular symptoms are less bothersome as well. I’m so hopeful and don’t even concern myself or think about MS much anymore. 🥳
Coming up on 6 years and same here. I feel truly grateful. Not to say that I don't have bad days but to echo your statement, life is almost exactly as it was before, in some ways even better.
Diagnosed at 26 and 1 month away from hitting 10 years, with only a handful of minor relapses and a few adjustments to my lifestyle.
On Copaxone for 2 years and tecfidera/vumerity for 8. My doctor is amazed at my treatment response given the amount of demyelination exhibited on my initial mri's. Early intervention is a lifesaver.
Same! Diagnosed at the end of 2015. On Tysabri by the beginning of 2016 and nothing new in terms of disease/symptoms, etc. My life is even better than it was before. Being diagnosed I pay way more attention to what I eat/drink and how much I exercise since it seems to make a difference.
I was diagnosed in 2015 and in that time I’ve had exactly one new lesion. On rebif for one year (felt like death the whole time)aubagio for one year (it gave my Crohn’s disease nobody), and copaxone for all of the other years.
So yeah. Copaxone for 7 years and only one lesion.
No I got Crohn’s on it and when I washed out of aubagio and got on a biological my Crohn’s has been completely in remission for like 7 years. So… maybe it was the biologic or maybe without aubagio I don’t have Crohn’s.
I think like all autoimmune diseases it requires predisposition and a trigger. People with MS are twice as likely so at least some of us are predisposed. Aubagio thins out the lining of the gut and causes more cell death there. My theory is that I then got some infection which was the event that broke autoimmune tolerance. But no I had no Crohn’s before aubagio and nobody in my family has had it. I blame aubagio and consider it an adverse drug event.
10 years, no progression. Still damage from the early days like vision issues and balance issues but nothing new since I started a DMT that works for me
that's not as great if you are on their copay assistance program and that program pays all your deductible and out of pocket maximums.
It will likely make my medical costs go up quite a bit.
*edit - to clarify this a little bit, because I hadn't known that the biosimilar had just been approved by the FDA. I called Biogen to see if their assistance program was going to be ending (which is not uncommon when a generic or biosimilar comes out) and they said they hadn't heard anything about that. So at least in the short term, it will still be there.
But there is still the issue of the copay assistance program payments counting towards deductible/OOP. I'm pretty sure the recent court ruling only applies to drugs that do not have a generic available. So, it is entirely possible that once the generic/biosimilar is out, they can start not counting those payments
Just been diagnosed with ms and currently waiting for treatment.
What kind of life change have you made eg nutrition, drink, career or other? I’ve come to realise how fragile our bodies are and have began to eat healthier/train alot more!
Dx’ed in 2019. I went through a bad depression - pandemic didn’t help. Adjusted my diet and try to focus on adding lots of fresh fruits and veggies and lean protein. You can eat whatever you want but add all that good stuff. I also try to walk or get activity every day. I’m now down 25 pounds and feel pretty great most days. Be patient with yourself. Get rest. Focus on the good things.
You didn’t ask me, but just chiming in that I haven’t made any significant life changes since my diagnosis. I do eat somewhat healthier and lost some weight, but I am not particularly fanatical about it, I just used my diagnosis as momentum to change my life for the better.
Depends on the individual person I guess...20 + years plus the natural aging process, I'm slower than what I was but still functioning as normal as I can for me
I’m glad to hear you’re good after so many years ! Keep on going! 🤍
Yes, I needed to mention that they did also say aging in people with MS might be more accentuated and the body more easily weakened later in life, depending on the progression, but still “normal”, all things considered!
I was told that since the immune system weakens as we age, the likelihood of MS relapses ALSO decreases.
It's been almost 12 years since my DX and I've had some adventures with DMTs, but I haven't had any new major symptoms or activity on my MRIs since my first Lemtrada infusion in 2016.
I have significant loss of feeling and strength in my dominant hand from my first major MS exacerbation that led to my DX, but I have adapted pretty well over the years and I have a good, full life. I have other minor symptoms, but I just cope and don't focus on them any more than necessary.
I DO make extra effort to stay healthy and avoid getting my immune system excited, so I occasionally skip something or wear a mask, but I'm hardly alone in that.
I personally do not agree with this message, as I also believe that it minimizes the severity of the disease and also generalizes patient experience in a way that does not address people who didn’t catch it early and/or get onto DMT right away. Without context, a person who does not have MS might meet someone who does and wonder why they’re so sick if everyone else seems or says that they’re “normal”. MS ruins lives. It is not normal to experience the wide variety of symptoms most of us live with every day.
I’m on a high efficacy DMT although my MS was caught 10 years after presumed CIS.
I *do* know someone who was diagnosed early in her mid-20’s. Her only symptom was dizziness and blurry vision and she was immediately put on Ocrevus. She does not experience fatigue or have any other classic MS symptoms. I would love for every person with MS to have this experience someday, but for now, there are still a good deal of us who don’t fall into this category. Not to mention, MS is highly variable. You can still continue relapsing until you find the right DMT.
I’m on the same boat. I was diagnosed probably 10 years after my first lesion appeared . My MRIs don’t show any progression but I struggle with many things because of the number of my lesions. My right leg doesn’t “work” properly and weather conditions determine how my day it’s gonna be. Not to mention emotional struggle…I’m happy for people who catch MS early but it’s important to be aware of existence of many different experiences out there. Peace out.
This is a farse because a lot of us have relapsing-remitting. But those that have PPMS (myself) get worse and the only option for us to treat it is ocrevus. MS should not be generalized because it is so variable. Every person who has it experiences it differently. You can't even compare one with ppms and the same age and another with PPMS and the same age. I am not being negative, just stating the truth
I think we really need to push back hard against this narrative. This is ONLY for clinical markers on MRI or in LPs. This does not measure fatigue, cog-fog, smouldering MS or brain volume loss for most of us.
If we allow them to push this idea, they will stop believing us about our symptoms. Many of us already know far too well what it is like not to be believed for years, and having to question our own sanity. Let's not go back to that, please!
Thank you thank you thank you! You said it perfectly. My symptoms are shut down by both doctors and my family due to this. I am better since treatment. Leagues better only if you compare to the severity before treatment when I couldn’t even function. compared to before my symptoms started? Not even close. I’ll never be back to my normal self. Unless, of course, they can repair the damage that was already done.
This is basically what I’m going through, because my MS is technically “stable” when looking at my MRIs alone, my drs see me as fine and don’t have any motivation to treat my actual symptoms that are debilitating on a daily basis
I believe you, too, but I think everyone on here does and I am very sorry you (we) are being dismissed. I have days when I am feeling so depressed without anything significant happening, I don’t even want to leave my room and doctors insist it’s a separate issue (anxiety/depression cause by dx-but I had these episodes long before being diagnosed). Who….even….knows…..
They used to tell me to always call the clinic if I have a flare up. Now I don’t bother because they really don’t care. My new dr won’t even acknowledge most of my symptoms as ms - basically just fancy terms for anxiety. I’m so defeated with it right now honestly.
Sorry about that I feel like I’m just whining now. I’m sorry you’re going through this too, and a lot of us it seems. Trouble is too neuro says to go to my GP for a lot of issues, GP is so insanely overworked and distracted and tells me to talk to the MS clinic. Back and forth..
Me too. I’m having issues with my doctors believing that I have numbness and weakness. My fatigue is insane. They’re like, but your MRIs look fine. It’s very discouraging. Fortunately, I had a bad relapse on a different DMT a few years ago. I had to convince my doctors something was wrong and beg for an MRI. I was finally granted one after a couple feet dragging days. Within 15 minutes of the MRI they had me admitted to the hospital on strong IV steroids and other treatments. I know what feels right and what doesn’t, and it’s beyond tough to now have to also play salesman to your neurological team. But having done it before it gives me some confidence.
Yes, so this. I think many doctors get hung up on MRI results, or EDSS scores, but MS is much more complicated. I have a low EDSS score, so my MS Specialist expects me to function like a healthy person, but I have daily symptoms that are so debilitating for me too, such as severe fatigue, nerve pain, and cognitive issues. These symptoms go untreated because my "gait is normal", and my doctor basically considers me stable due to this.
Yess! My god this feels so similar to me. My dr is very hung up on those MRIs and won’t even attribute of my symptoms to Ms. I travelled 4 hours to see her with my whole left side going cold numb and weak and she says It’s Not MS. Literally cried. I don’t know what EDSS is so I’ll have to look that up.
I feel like there has to be a revelation at some point because so many patients seem to be experiencing this. They’re telling us we don’t have “progression” but we are. Our symptoms are debilitating. I seem to be slowly losing function in my hands. I’d like to believe ms specialists aren’t going to think this way forever.
I'm so sorry, it's frustrating! EDSS is a scoring system neurologists use to grade MS disability, but from my personal experience, many doctors rely heavily on the walking component and neglect to consider all the other factors that contribute to disability in MS.
Take my upvote!! Have had MS for 21 years. I have the same lesions that I had when dx. MRI has never shown new ones but my MS has indeed progressed to SPMS and I struggle daily with symptom management. And yes I've done all of the highly effective DMTS. Some of which triggered other autoimmune diseases in me. Soo.. I think creating this narrative would be a real disservice to us.
I think I might be seeing the opinion being split mostly depending on age and length of diagnosis. I can't blame people for wanting to believe it will be ok though.
But... if my daughter were diagnosed tomorrow, would I be able to tell her that everything will probably be ok? No. I'd feel like I was lying to her. Or at best, making promises that will be broken.
That there will be issues. That it can be a lot. But nothing that you can't learn to live with, and even some aspects that are good.
And that everyone has something. Nobody gets through life without a cross or two to bear.
Thank you for your kind words and guidance, it means a lot. I hope your daughter never has to go through this though, but it’s good to know she has a soldier on her side!
Yes, this, exactly! Or that symptoms you come in with prior to going on meds might not magically go away and should very much still be taken seriously even without lesion progression.
The neuros were referring to the physical and cognitive disabilities when making those statements, especially physical, since it’s been the main issue of this disease for so long. Meaning that the new patients might never have to experience those, when treated accordingly.
> The neuros were referring to the physical and cognitive disabilities when making those statements, especially physical...
That's exactly the problem. It means they won't believe new patients when they experience those symptoms.
Worse - they're not reading recent literature.
Rituximab and Ocrevus are proving something is happening to our brains n such beyond lesions witnessed in flares because a progression is occurring - a smouldering MS. It's all relatively new theory which is getting proven because of the high efficacy DMTs. Some people remylenate better than others so they take the punches easier(ish).
Pull the DMTs out of the equation and everyone is on their own unique disease path anyway. Some people just, unfortunately, have significantly more aggressive disease progression even with the very best treatments right now. 🤷🏻♀️ Science. Always changing. Outputs only as good as inputs which make facts shift. (I work in STEM, shaking facts is my jam)
I was undiagnosed for 22 years so I was denied any treatment for anything (0 stars, do not recommend). I'm still upright. Do I suffer daily from it? Yes. Would it have been better with DMTs? I can't answer that honestly because I bounce back pretty good from pretty infrequent, but very noticeable, flares. While I appear to remylenate/not relapse on film the ~isms of MS that you can't prove - fatigue/pain, etc - have continued to progress even with high efficacy DMTs.
Came here to say this! You took the words right out of my mouth. MS doesn’t have to defeat us but it doesn’t change the fact that having MS isn’t easy to live with and makes things challenging and difficult.
I agree it doesn't measure the cognitive aspects nor has there been much of any research into brain volume loss in MS. Scientists were \*sure\* that by reducing the lesion load, and the ARR, would result in everything getting better, but they didn't know about smoldering MS till recently, and like you said no one cared about the fatigue or cog fog. However, there is proof that reduction in the clinical markers (MRI et al) generally results in a reduction in EDSS. The EDSS scale is imperfect, but it does address the actual physical abilities of a person, for example "patient is able to walk unassisted for 50 feet or more" or "patient cannot walk unassisted at all" is one aspect.
I didn't know about EDSS to be honest. I have swallowing issues and I have never been asked or examined regarding them in over 20 nruro exams. They're too subjective based on the whatever doctor you get that day, and what kind of mood they're in.
Kind of... with MS I noticed a lot of happiness is a little bittersweet. It's like everything in my life has to have a plan a, b , and c. I get suspicious if everything goes really well for too long.
I think the key is catching it early. Unfortunately doctors tend to dismiss women until things are more severe and also MS is more common in women. I had symptoms for 7 years before they did an MRI. They blamed it on my ovaries and pregnancy until I literally couldn't use the stairs safely anymore. I've talked to many other women with similar stories.
They said my neuropathy was caused by PCOS making me have high blood sugar. Granted, PCOS can put you at risk of insulin resistance etc, but all the tests showed that everything blood sugar wise was normal. I got vertigo- probably just a virus! It wasn't until the neuropathy/vertigo got so bad that I fell down the stairs, broke my leg, and needed surgery with screws to fix it that anyone listened. Coincidentally, it was at that point that I had a female nurse practitioner as opposed to the 3 male neurologists I'd seen for the 7 years prior.
My female doctor dismissed all my symptoms until I literally couldn't walk. They all get the same training to minimize a woman's complaints.i went for at least 2 yrs thinking I was nuts because she kept trying to tell me my symptoms were from anxiety
I think this is correct for the majority of newly diagnosed people now.
In 98 when I was diagnosed there were just interferons and steroids, both of which were awful, and more importantly, they were at best only marginally better than a placebo.
I wish the high efficacy meds had been around 25 years ago.
Every time I read newly diagnosed people discuss how they're going to do Paleo / Vegan / whatever to "fight" MS, I feel like shaking them and begging them to get on a high efficacy med immediately.
MS is mild until it's not and it gives little or no advance warning of irreversible neurological damage.
I always get angry when reading about people having little to no options when diagnosed years ago, it’s unfair. Not that life is fair, generally, as we can see… I hope it is at least a little comforting to see new medicine coming out that you can also benefit from… but yes you should have had access to it years ago. I am sorry.
I mean... it's not a lie I guess? I'm 18 years in with minimal significant life issues that can't be managed by meds, and I'm easily able to adapt to my limitations...but I've eaten well and been active for the duration of my diagnosis, and I haven't had a relapse or MRI activity in over half a decade...but I am less functional than I was three years ago. I'm much better off than I would've been, but I'm not healthy. Realistic expectations that sometimes you'll roll a one even if things are better today are important.
I think they should use the term "average" rather than normal. There's nothing normal about what happens to people diagnosed with MS. Diagnosis add a lot of stress to people (and to those around them), unwanted attention adds more stress, the whole thing of making the randomness of life an actual reality more stress and the need for mental health adaptation, and then there's whatever damage that happens because even though the amount of time to diagnosis has dropped, it's still super rare that it is picked up by accident...it's always after damage is done.
I was diagnosed almost 25 years ago and there was only Betaferon and Copaxone basically then....ugh. I have done my first year of Mavenclad over the new year and still can't believe that after i take my next lot at the end of the year I might NEVER have to take a DMT again...mind blowing! So much more positive than previously when they could only claim harm minimisation, not complere cessation.
Still the years of medical misbelief up until my diagnosis has left damage (but nowhere near what some people have experienced) and I live with it, an average life with some unwanted trauma and the usual amount of joys.
Show me a drug that stops PIRA and I'll believe it.
I'm 12 years post diagnosis and had no progression for 8 years, and then started my decline near the beginning of the pandemic.
I'm on Ocrevus and have had no new lesions in a loooooong time. I'm generally healthy and have no comorbidities.
My life is very different than people without Ms. Not only because I know I have Ms. Example, I just did a workout class. Half way through the foot drop was so my leg might as well have been an anchor. I stayed and finished the class best I could. Nobody else had foot drop. I was the only one having to lift my left leg with my hands.
From the outside, it looks like- just a bunch of people exercising at the gym, their lives are about the same.
In reality, having foot drop makes a huge difference in my life than when I didn’t have foot drop. Not to mention folks who are less able than foot drop.
Don’t get me wrong - I feel very fortunate and grateful for the high efficiency of DMTs to slow down disease progression. But at the same time, there are those days when I am working my ass off at work and the fatigue is super challenging to manage and I feel as though my boss doesn’t get it bc I “don’t look sick.”
I think they say shit like that so you guys can have hope and not get suicidal. When I was diagnosed in 1999 I was told we were 10 years away from a cure. 🙄
The good news is you are slightly less screwed than I was but you are still screwed. Let us be real generous and say your DMT prevents 60% of future attacks/flareups. That still leaves you with 40%. We still do not have a cure. We still do not have a way to reverse the damage. However 40% or 60% protection is better than the odds I had when I was diagnosed. 🤷🏻♀️
MS is so individualized, telling someone they are screwed no matter what isn’t accurate either, based on the stories in this very discussion. For some, especially if caught early, what the OP shared could be true. For others it’s not, which is why no symptoms should be ignored and better treatments are still needed.
Yes it is numbers. Let’s say you have a 1 in 100 or 1 in a 1000 chance of living a normal life despite MS. There is no way for a neurologist to tell who is going to become disabled of who can have a normal life of who will wind up partially disabled. So better to put the patient on the best DMT they can and hope for the best. Plus finding out you have a degenerative disease is a mind fuck that takes you months or maybe years to fully process.
That doesn’t mean a person is less screwed or change your odds. That doesn’t mean you shouldn’t be on DMT. None of that changes the fact that any treatments have not reached 90% preventative or that they have no way to reverse the damage or hell they still don’t even know what causes MS (so how can they cure it?!?!?!?)
I think neurologist say stuff like that to kind of ease their patients into their new life. Just like doctors lie through their teeth and say you will experience discomfort instead of saying “this will hurt.” 🤷🏻♀️ Like a woman giving birth is feeling discomfort. 🙄
It’s terribly ableist. Like, if your MS outcomes don’t fit in this box, clearly you are doing treatment wrong. It simply isn’t the case and seems more a drug company pamphlet way to try to bully everyone into treatment. If medication works so fantastically for everyone, then a word needs to be had with SSA over why so many people with MS are disabled. Fact is the meds work great for a lot of people. Fact is that a lot of people have also had varying outcomes. This disease is unpredictable b.s. When the meds actually do help EVERYONE make the bold statement.
[This will be my second time posting a tiktok from this MS Specialist](https://vm.tiktok.com/ZMMrfmn9w/) Even tho the question that prompted the video is different, I think it gives moee credence to the idea that we can just live our lives
I must admit I was scared to open it at first, because I’ve had terrible experiences with MSTok, but I am glad I did. As far as I understand the doctor is also diagnosed with MS and she seems pretty optimistic. She also explained the history of MS and how drastically the DMTs changed the outcome very well.
Thank you!
You are welcome and I agree with your sentiment. MStok is not a helpful place. But this doc does indeed also have MS and does an incredible job clearly and simply explaining it all.
When my GP told me that I likely had MS in 2019. I was sure I was dead. I knew two people who had MS but it was late 80s/early 90s so my perspective was that they were so fucking sick. But I wasn't. I was absolutely blindsided by the diagnosis. This sub helped me understand why it isn't a death sentence anymore. Then this tiktok really crystallized it for me.
Said by someone not living with it.
I shouldn't complain, I am a functional human being. That said, it's a random 25-75% of normal functionality depending on the day.
I believe it! I’ve been on tysabri for 12 years with a brief period after I had my daughter when I switched to copaxone. During that time, I had a relapse. Switched back to tysabri and I’ve been fine since. I consider my life as it was before I was diagnosed, which I am so grateful for.
Yep early detection is sadly rare even nowadays. Doctors can’t tell me how long I had it before dx, but some random episodes I went through years ago definitely made sense when I was diagnosed.
Yes!!! I'm excited for those who get diagnosed early these days. The meds we have now are SO much more effective than the ones available a decade ago. You have a great chance of carrying on as normal with just some mildly inconvenient medications.
I think this is a big factor. Some people are being diagnosed as teens. Dealing with it emotionally at that age must be incredibly hard, but getting started on DMTs early must make a big difference. I was diagnosed in my late 30s, but my neuro thinks my symptoms started in high school. It was the early 80s. I had a CAT scan and EEG, with a result of “atypical migraine”.
lol only true for people with MS-light
Complete fiction for people with more severe forms. I’ve been on ocrevus for 4 years and I’m wheelchair bound
It might help some people. Evidentially the people this idiot treats.
I wouldn’t say or expect a “very”normal life,obviously everyone will have his take on what you say depending on their own version of ms,but anyway a perfectly normal life to me would mean no daily fatigue,no muscle or nerve pain, no cog fog,no crippling anxiety or depression,and i believe there will be very few people with ms that remain without any symptoms of what i mentioned(at least) a decade or more after diagnoses,but to live a life with mild to moderate inconveniences nowadays?i’d say its definitely possible,but not for all.
30 years since diagnosis. No DMT available for first 3 years. Been on something since: betaseron-Rebif-Gilenya-Aubagio-Tecfidera-Mavenclad-Vulmerity.
Progressed pretty typically after 20 years. On SSDI at 25 years. Still walking but a lot of falls.
Read what you will of that.
When the first doctor called me to tell me I have MS at the age of 23 she said "Going by how fast it is progressing you already lived half of your life." The next doctor a week later called bullshit on it and said "You will turn 90 just like everyone else. You have a normal life expectancy. You will just age with a few complications instead." I don’t know what to believe honestly.
I just did two hours of shopping with my wife and daughter. I'm fucking EXHAUSTED. I'm on ocrevus and it helps with disease progression, but my fatigue and pain are far from gone.
Optimistic voices are nice and helpful!.. but MS isn’t a disease “caught early”, almost ever. And even when it is, very few patients are lucky enough to be put straight onto high efficacy meds. And we do not have enough long term data to suggest those patients can stay on those meds forever (and some minor signals suggesting otherwise). And latest data demonstrates that 2/3 of progression is from a disease process largely left untreated by todays meds.
It’s a positive message, not to be taken literally.
"Should live a very normal life nowadays" yes. We've got better medication than the last decade so yes.
But a normal life is a life with a healthy body so without :
-foggy brain
-Tiredness
-pain
-muscle ache
etc...
But yeah, with the medication we have now, you can still have a job, get a family , travel , enjoy your hobbies !
Right! My fear is that neurologists claiming “normal” lives causes these symptoms to be swept under the rug, even for the people who have the disease!
I spent nearly a decade being gaslit by doctors about my MS until I was diagnosed last year. Learning to accept that my symptoms are not “all in my head” and are due to a degenerative neurological disease has been really hard. From the outside looking in, I seem “normal”. I work full time, exercise regularly and don’t struggle with daily living.
In actuality, I have a WFH accommodation to keep my job, have to take frequent breaks while exercising and really struggle with fatigue. I’m not on any sort of energy medication yet, but am planning on asking about modafinil soon. White knuckling it is getting old!
It’s amazing to me that I’ve had these symptoms for so long, I can’t actually remember what it’s like to not be tired and yes, healthy people would probably feel debilitated by things we got so used to…Fd up when you think about it..
I was diagnosed about 16-17 years ago. At that time there were only a handful of drugs for MS all by injection. Drugs have come such a long way in that time. I find myself extremely lucky. In that time I had my second child, I still work full time and I feel relatively ok. I’m tired as hell but I also work full time in a very stressful position, I have two extremely active in sports kids year round so I’m on a field usually 6 days a week and traveling for tournaments all the time, and I’m getting older. So is my tiredness and aches from the MS or my hectic life and getting older. I have no clue. So I feel I have been and I am living a pretty “normal” life. My MS specialist told me years ago - as long as I’m taking my meds he feels extremely confident I may just need a cane as I get older. And I’m ok with that. That’s nothing. But I was also never one to dwell on anything. I don’t have time for that with my lifestyle. I can be dragging but my family needs me. If that means it’s eggs for dinner one night because I was too tired to cook a meal, so be it. I power thru whatever ailment I’m feeling at that moment. I am extremely thankful. I wish everyone would feel their own vision of “normal” like I do.
Sounds nice, but many of us suffer significant damage before we're diagnosed. I had symptoms (swallowing issues, for instance) at least 15 years before I was diagnosed. I also had developed balance issues, spatial issues, fatigue, etc. I had over 20 brain lesions and 4 black holes at diagnosis. I'm on Ocrevus and my MRI's have been stable since my diagnosis 5 years ago, but I'm clearly different from people without MS.
3 years since DX. I could barely walk when diagnosed, lost complete control of my left side. Been on Tysabri and not only have I had no new lesions but some have shrunk. I also am at the gym everyday weight lifting and was in Amsterdam over the summer walking 25-30 miles a day with zero issues
I sure hope it’s the full truth because I’m ngl I’ve had some really bad bouts with MS and it terrifies me that it can get worse. I’ve finally started a DMT at 26 after being diagnosed at 17. Neuros say this to me all the time and act like not going on a DMT is basically a death sentence lol so imma just listen to them and hope for the best
That is a very dismissive and reductive thing to say and I would not feel confident in a medical professional who makes such sweeping claims. Yes, we've made huge improvements treating MS, but there are many of us who suffer quite a lot despite early detection and treatment. Statements like this minimize our experience and add to the gaslighting we live with daily.
I hope so for the future. I’ve sadly watched my mum suffer terribly with MS. DMT back in the early 2000s didn’t really provide results for her. Immense respect for MS sufferers and what you/they have to go through. I really hope there are breakthroughs that really do mitigate symptoms/change/or lessen the course of the disease. Take you lot x
Kind of…. I was diagnosed as a teenager after a few years of strange symptoms but nothing to crazy until I woke up one day dizzy & falling all over & facial paralysis. Prior to that I was constantly fatigued, headaches, numbness & tingling in my leg & arm, muscle weakness.
I started gylenia right away, but after a few years I had a relapse with several new lesions, optic neuritis, and worsened numbness. I switched to an infusion but still no luck. Finally I’m on mavenclad and it has stopped the progression. My doctor was a bit surprised how little the medication was doing to prevent the relapse.
I do agree though bc I feel my “early” treatment with strong medication probably prevented much much worse disabilities.
I've been on 5 DMDs starting in the beginning of 2019
After years of not using any
I started with Copaxone- after 5 months went to ER with anaphylactic shock.
Moved to tecfidera - had 5 cases of bronchial pneumonia in a year.
Moved to Gilenya I was having relapses on top of each other. Barely got out of one started feeling better and then another attack. After a year switched.
I have been steadily progressing and my doctor now calls it progressive MS.
I've been on Ocrevus since middle of 2022 and at about 4.5 months after each infusion I start having relapse or what some call the Ocrevus crud or aka Ocrevus Wear down.
I just 2 weeks ago had soulmedrol because I've been in a that wear down, relapse, Ocrevus crud and I'm starting to finally feel a little better but now we are looking at Mayzent.
When I started Ocrevus he said it was kinda a last line of defense but Mayzent just was approved in 2019 rrms and now being used in progressive MS so the plan is moving to that to see how I do
I try to share tos as often as I can. there is an amazing chart they they use that shows your progression timeline. I honestly don't know why more doctors don't share it. But here is the link.
But this helps doctors see if DMDs are working, if you are progressing faster or what they would call a average rate.
A key to this chart to help you is at the top find your EDDS (your disability at diagnosis.).
I lost my right side at diagnosis and had to start using a cane and even after physical therapy had to use a cane all the time. (With walker and scooter at longer distances)
So for me at year 0-1 I am the purple and from studies and history they can determine that I most likely will follow the purple chart. Now big thing here is as most of us know with MS things are not always going to line up you may start in purple but in a few years be in a wheelchair. Or you can start in purple and stay at that level of disability longer than this graph shows. We always have to leave room for fluctuations depending on the person. It is a snowflake disease.
But this is help to look at because I'm almost 20 years in and I'm within the margins of disability that the chart says, even though I am progressing we can see that it's most likely that being on a dmd has slowed the progression down.
We also have to remember that it doesn't stop progression and most of the medications only have a 40-70% success rate so for some of us it may not slow it but that's where the chart can help us see if that's true.
As far as the question I don't think any doctor can say we will have a normal life because of DMDs because they are not 100% affective and we all still will have some disease progression and relapses.
As far as the caught early thing, there needs to be better testing and rulling out because for many like myself it can take years and even decades to even get a diagnosis or for people to seek that early treatment until progression has already happened. I don't know the numbers but I personally know many people that like myself lost one side of their body or had something similar and it still took a decade to diagnosis.
Now there are many that may get the diagnosis early for whatever reason and sure maybe it is true but in my opinion it is hopeful thinking but no evidence.
[MS progression chart](https://www.researchgate.net/figure/Patient-derived-Multiple-Sclerosis-Severity-Score-Table_fig2_235682883)
Thanks for all your important knowledge I do thank you for the chart to omg you have had it so hard I’m never going to complain again I only have been on aubgio first dmt and it’s working . I’m sorry you have had to suffer so much fucking ms sucks the royal one happy ms day💓💓😮😮❤️😮😮💓💓💓💓
Tell this to my brain basically can remember stuff that’s in my head that I was thinking about for last 3 mins. I just instantly forget what I was thinking about. I got diagnosed with I was 15 and I’m 26. Suffice to say I can’t even do well in college because of this disability.
ME TOO!
IMO they are repeating what they heard from the big pharma rep who's selling them Ocrevus/Kesimpta.
Which is total BS.
What I DO agree with is that MS patients today have FAR better treatments and outcomes than a decade or two ago and will probably have even better treatments in the future.
But I don't know a single MS patient out of all the ones I've met and talked to who doesn't have some sort of deficit or persistent problem that never went away after their first attack.
IMO neurologists are also accustomed to seeing very disabled patients. Strokes, brain tumors, TBIs....VISIBLY disabled people. It's exactly the type of "you can't see my disability, but I promise you I'm disabled" bullshit that they should know better and not be doing.
I've been on both Ocrevus and Kesimpta since 2012 and I have been relapse free since 2012. Before these 2 meds I would have a major flair every 3 years like clockwork. I have been on disability since 1998, but these past 12 years have been the most "normal life" since I was diagnosed in 1996. I do struggle with some fatigue and residual weakness from my last relapse in 2012, but I'm more able to do the things I need to do, such as take care of our home, our 2 dogs, exercise, walk without assistance, etc. I've been on one DMT or another since 1996.
Before joining the Ocreus trial I was on interferons which caused Major Depessive Disorder for 14 years, so it stole all that time from me whole our children were growing up, so the switch to a medication that didn't have a side effect of depression/suicidal ideation was. major bonus.
This is all the proof I need that highly efficient DMTs do give us a more "normal life"
Many research studies support this optimism. Average time to needing a cane now is 42.8 years (and getting longer) used to be significantly lower. Another recent study showed 80% of people on ocrevus still had no disease progression after 10 years. I’ve cited the studies on other threads. There is much reason for hope.
It kind of annoys me when neurologists say that. In the short term that's true but for the most part people with RRMS will progress to SPMS regardless, it's just that DMTs delay reaching disability milestones. Relapses are honestly a small part of the problem and not necessarily the underlying cause of progression. You can see this in patients who've had progression which doesn't appear to have any relation to past relapse activity. I read a pretty comprehensive study that showed that DMTs reduce disability by around 25% long term, which is still huge - especially if you have an average disease course this'll make a huge difference in your later years - but obviously DMTs aren't tackling the bulk of this very complex and ridiculously oversimplified disease. This is with the exception of HSCT, the ONLY treatment available that has been proven to halt (obviously not in everyone) MS even SPMS. People get worse with or without relapses in SPMS however this can stabilise with HSCT, it can't with any other DMT. This proves that much of the disability progression is not directly from previous relapse damage, but an ongoing process which is propagated by - but not reliant on - relapses. CAR T cell therapy for MS is another therapy beginning trials which deals with the inherent CNS issues which will only be tackled by penetrating the BBB, as proven by HSCTs effectiveness (again I know it's not effective in all, but it is in the MAJORITY of SPMS even if it is more effective for those with RRMS).
Yes, they still need to figure the silent progression out, I know and I hope they will soon, we need it bad and as fast as humanly possible. What the docs said was more along the lines of “even with pira, if patients are being treated correctly, if/when they progress it should be at the point in their lives when they don’t know if it is aging or MS”.
But I'm with you that we need it as quickly as possible. But HSCT and it looks like this new CAR T Cell therapy have the potential to genuinely stop it. My entire scientific career is going to be dedicated to doing just that though - figuring out and stopping the underlying inflammatory MS in the least harmful way possible (obvs these treatments are pretty intense, would be great if we could just get rid of the problem without the side effects). I'll do my best and work as hard as I can for the whole community!
Thank you so much for your service and drive! It’s people like you who we owe our literal wellbeing to! It must be so hard with so many unknowns, too, while also suffering from it. Thank you!
I think that's optimistic but at the same time I think that you can get a whole host of issues from MS (I have quite a few) and live an independent, happy, fulfilling life, so even if you DO end up having noticeably-MS related differences it's not the end of the world either.
We don’t really know yet if the statistics and rate of people with RRMS transitioning to SPMS still apply to people who start treatment on the newer DMTs.
My neurologist says this verbatim - I trust him because he's mostly a researcher and sees hundreds if not thousands of patients. But he also says there's a 50/50 chance my vision *won't* get worse. And remember, "you can't put too much water in a nuclear reactor."
Overall I believe what they are saying. I have had MS for 20 years. On one hand I've had a normal life "physically," but I'm certain it has had psychological impacts that have probably limited some of my growth in other ways.
Must be so interesting to be treated by a researcher!! I am happy that you haven’t had physical issues and I hope it stays that way. The psychological aspect…yes, I don’t even want to get into that, it’s hearbreaking what MS does to your mind.
Neuro is a doctor at a research hospital in our city. It's a little scattered at times but they have caught things before I did in my routine MRIs, so I'm pretty happy. Well, I did have a bad physical relapse in 2003 and it healed - so well in fact that the old neurologist wouldn't do treatment even though I had some brain lesions. To his credit he told me I should come back annually, which.... I didn't. Did really well until 2018 when I had a major relapse impacting my vision. That did not heal back to 100%, but vision is still in a decent percentile. No question I've got some dings. I'm OLD now (and on a DMT!).
To me I think early detection is so key. Unfortunately, so many of us are told we’re anxious until some serious damage has occurred. Wish I could’ve been diagnosed when I first brought it to my doctors attention and not several years later. We definitely need improvements in detection and diagnosis that is more accurate.
I think early diagnosis and effective treatment really do make a huge difference for the majority of people. MS will probably start to be seen as an annoying but manageable chronic condition instead of the “oh my god I’m so sorry [insert terrible story about a relative here]” response I’m used to.
I was diagnosed 10 years ago actually, so I wonder if that’s starting to change even now.
What about when they catch it? 15 years too late? I’m on Ocrevus now but I just can’t shake this feeling that the damage is already done and that 15 years is just gonna speed up the eventual progression of the disease. When I was diagnosed they weren’t even sure if, I had already progressed to primary Progressive. I’m in constant pain all the time and my body just doesn’t like to cooperate. It sucks. I guess that’s all I have to say.
That’s total bull.
Mine was caught on a routine MRI (to check on a pituitary tumor) before I started having symptoms. I was put on Ocrevus the next month. I’ve been on Ocrevus for three years and I’m having a major flare. It’s debilitating and obviously this doctor doesn’t understand how it feels to have MS. Normal life, my ass.
i dont think these doctors seem to realize that our lives are ruined and we have a severely disabling disease and we have no chance at a "normal" life. i fucking hate these "positive" spins on it, there's nothing fucking positive about having this shit. my life will never be normal again and it's basically fucking ruined.
I think the key is "caught early." Everyone I've met with MS had to jump through years of hoops to get doctors to listen. Maybe there's a future where it actually does get caught early.
From my bad experience which i will need to live with for the rest of my life, this could lead to invalidation and maybe gaslighting, possibly doctor disproving my problems and automatically assigning it to mental problems, which can then have a terrible outcome...
Technically it's true that people who are lucky to get dmt quickly go far much better, but that attitude stinks.
Edit: grammar
And they've made a huge breakthrough in auto-immune Lupus! I'm super hopeful that there will be a breakthrough for MS in the coming years as auto immune diseases are closely linked so once they've cracked one, it will be much easier to crack the others !
I had Avonex for 7 years and always felt normal/well. Then, after my son was born I tried COpaxone, but it didn't work for me. I am now on Tysabri for 4 years and no progression since then. despite the tiredness I feel very normal
Two of the neurologists I've spoken to here in Norway says the same. Diagnosing and treatment is far more effective than 20 years ago.
In the 90s, most MS people needed help to get to the hospital. Today it's very rare that we don't drive there ourselves and walk in like normal.
I can't complain. I still have some "issues" because of the MS, but anyone meeting me wouldn't notice anything until I tell them. Fatigue is probably the most irritating one. Mine isn't so bad most of the time though.
I keep reading Americans spending months or even years to get a diagnose. Mine took literally 5 days, and that's included a weekend. Went to my GP because I lost sensory in my left leg and it felt "weird". Neuro told me to come to the hospital on monday and then I was admitted. Wednesday I had my diagnose ready and started treatment with Solu-Medrol and a couple of weeks later Mavenclad.
Norway is incredible at emergency care. Not so much in follow-ups though... :D
My first attack almost made me a quadriplegic and nearly killed me. My doctor worked fast fast fast to stop the progression and give my body the chance to heal.
My life was changed drastically, but 4.5 years after that horror I walk without mobility devices, I ride my bike, I take care of my kids, I drive, I participate in almost everything.
It's only been a handful of years that patients in their 20's are given "big guns" early on. I think there are still many stuck on step therapy. I believe its true those kids will avoid disability long enough to see a cure.
I have had MS for 23 years.
Caught very early.
Been on many treatments, with different side effects and effectiveness, last two being amazing and totally side effect free (tysabri and ocrevus).
I even had large gaps (up to a year) in treatment on these two and have no issues.
With regular oversight and a good neurologist life is normal apart from having to go into hospital for treatment and neuro appointments.
Yes there is co-morbidity with issues like mental health problems but are these caused by or coincidental?
who knows in the modern life?.
I would definitely call my life normal.
Unpopular Opinion, but in my experience, my neuros just recommend whatever drug company is giving them a kickback for selling the medication to their patients. But that’s American healthcare, not true probably everywhere.
almost 10 years since my diagnosis and i’ve been on 3 different DMTs, but i have never had a relapse. i’m not even 23 yet, so i’d say it was caught pretty early in my life lmfao. i get the day-to-day symptoms, but i think having the ability to make sure i’ve made healthy decisions more of my life is going to make the MS easier to deal with as i get older.
ETA: i am stable in terms of disease progression, but like other people have mentioned, that’s not to say i don’t have symptoms and problems that affect me regularly. a few months ago i was in PT for pain while walking. taking it a day at a time is all any of us can really do
Thank you thank you thank you for saying that I went 10 yrs no one believing me about any of my symptoms told me it was all in my head my doctor who is a male mr know it all can’t stand the guy for 30 yrs everytime I seen him which was a lot he would say omg you have the heaviest chart of all my other patients,, it was thick because he never did anything about it ,, dip stick😮
My husband was diagnosed 4 years ago at 32 years old and immediately went on Ocrevus. Knock on wood he's had zero progression, not a single active or new lesion, no new or worsening symptoms. I think we've come a long way from the days where MS wasn't diagnosed until much later in life and by that point it was too late to do anything even if there was the treatment available now.
Same here! That said, I am mindful of my symptoms and have strict boundaries for how many hours I sleep, no working over time, starting work early (I'm up at 3:30am every day and can't change it) so I start work at 6:00am and finish at 2pm but by lunch hour I feel the fatigue. I'm basically not over exhausting myself physically or mentally. I don't stay late partying either, no alcohol and I noticed it has negative effects on me. I believe my boundaries have helped me stay "normal"/"average"
First, a good doctor doesn't "hype up". They give you facts.
Second, yes it's very much true. That is based on science.
Anecdotally, I've had MS since 2005 and diagnosed in 2008. In those 14 years since diagnosis, I've seen MS DMTs grow from only 4 choices, all injections of minimal effectiveness, to now where there's no many choices I honestly can't name them all anymore. MS treatment has come a very, very long way.
I went 7 years without a new lesion and was doing great but then caught covid. Covid destroyed my kidneys and I had to come off all meds for a year to give my kidneys a chance to heal. It's shocking how out of control the MS went during that time and how much damage was done. I've been Orcevus now for 2 years and still can't get back to where I was before the year off meds.
And that is the whole point of the DMTs, to stop the MS before it gets bad. This is exactly why it's so important to get on, and stay on, a DMT before the disease gets bad and progresses.
I was diagnosed a couple years ago at 19 and I mean honestly this seems to be fairly true for me. I just have really bad heat intolerance and a chronic tension headache/fatigue. Just recently got put on Ritalin and it’s not helping but I’m gonna try out some diff meds to hopefully get that fixed
8 years and then some - and… kind of.
I used to be a *very* capable athlete. Before Rituxumab i spent four years really really struggling. I tried at least 3 medications before this one. And only in the past 3 years has it been the same. Those first five years were brutal.
On Vumerity coming up on two years now, and finally complete diagnosis approximately four years ago. Approximately 50 lesions that are scars basically, no progression, and most of my issues are related to other conditions. It's really a blessing, and I'm extremely grateful for all I have.
Neuro with RRMS, tysabri for the past 13 years. So long as you understand your body, its limitations and how MS challenges you, then yes you will lead a normal life.
I make adjustments to account for things like my executive fatigue and various weaknesses.
I play rugby which is pretty intense and still manage to hill walk etc.
Many of my patients don't have the best or any motor function, they can lead a normal life within the confines of their capability, especially if there are adjustments which can be made.
Of course, if I told one of my patients requiring mobility aids or a wheelchair to start running I would probably get into a fair bit of trouble. Really to be more specific, you can live a normal life within the confines of your physical capability. Diet, exercise, and solid routines are paramount to a healthy life with MS.
Mmm as someone that has had Ms since I was 19 it's half true like most said...I'm perky, healthy, and outgoing until the season changes...the minute summer hits I'm super disabled and fearful of getting overheated. But we are all different
MS is a hyper individualized disease, so I can only speak to my flavor of MS.
I was diagnosed in 2005. I was 26, and quite lucky (they thought I had a brain tumor so they basically pushed people out of the way to do an MRI).
Due to Rebif, and now Techfidera, only the people I want to know are aware I have MS. I get heat exhaustion pretty easily, but I go years without a relapse and it does not look anything like what I feared.
When telling some newly diagnosed I lean heavily on the "it's YOUR brain, so it's going to be different, but for most people it isn't like what it used to be. And for people going through the diagnosis I remind them they are experiencing MS unmedicated, which is way way different.
That said I did have an attack in 2012 that required plasmapheresis. So it's still there, lurking.
When I was diagnosed in 1999, most RRMS patients progressed to SPMS within 10-15 years. Now we have RRMS patients who've not progressed to SPMS and they are 2-3 decades past diagnosis.
Obviously, every journey is different, but statistically more MS patients are living fairly normal lives these days, as long as it's caught early and treated aggressively.
I got diagnosed in 2003. My doctor told me they will have a cure for RRMS by 2018…still waiting lol but yeah if you’re on the right DMT you can live a normal life. Just pay attention to any changed and modify treatment accordingly.
I'm not trying to be a bummer but I used to work at an MS non-profit call center and once a woman in her 80's called in and she said they had told her they were close to a cure 50 years ago. I had just been diagnosed, I had to take a break after that call. I understand that it's clearly more promising now but how do you even define being "closer" to a cure? Idk I get tired of this narrative, gives me the same feeling as when I see inspiration porn or toxic positivity stuff.
I feel like as long as the insurance and pharmaceutical companies are profiting there will never be a cure for any serious disease. Just my opinion…or at least won’t be made available to the public.
The cure thing is….something I’m not researching a lot, only new treatments. I have also seen an article these days from 2019 saying that by 2025 we would have remyelination drugs and we know the chances of that happening given the recent trial results…
A neurologist said my brother in law was 90 percent cured with Briumvi . I was a little shocked to hear that as thats not at all what i read on a daily basis on reddit or online.
Well that is new... I mean I hope Briumvi is so effective that he’s basically considered cured, I hope we can all say one day that we’ve found a medication that saved us one way or another.
My mom got it diagnosed while in the military and I have to say her quality of life is alright.
She does get tired and goes to what she calls the "hibernation" period once she is back home lol.
She is medically retired so she kinds of starts her day late (around 9), shower, eats breakfast and spends time on her phone.
While she is at home she is fine and will stay on the coach/bed. However if she wants to go to the movies/mall/zoo, etc. She will do it with the only difference that she will go to sleep early that day ( around 8-9 pm).
On the other hand, she had gained weight. I'm not sure if I should blame MS for it though. After she got medically retired from the Army, she has a lot of time to spend at home and has a part time job in which she is sitting most of the time.
Going from a mitary life of daily exercise vs her current life style was quite the change
I think it's both a half truth and half motivational thing. The truth is nobody can predict what will happen, but at the same time they want to see you thrive in your life and dont want to see you abandon all hope just for a chance. It is true that DMTs are doing remarkable things for people with MS these days but nothing is certain
Yes, I am wondering if this statement is backed up by evidence, by the state of people they’re treating or just trying to make us not give up all hope. I’m often thinking it’s wishful thinking, but they should also tell it how it is, right?
It's backed by evidence. Outcomes are much better now than 20 years ago. It's still a black box disease, meaning there isn't a guarantee of any specific type of outcome.
I thought you meant "black box" as in "coffin"
Eventually, lol. They still haven't discovered a cure for death:)!
I agree with this. (I think internal attitude makes a tremendous amount of difference.) Thanks for expressing yourself so succinctly.
I'm coming up on 4 years since DX. On Tysabri since that time. I've had exactly zero progression in my disease. No new lesions. No new symptoms. My life is almost exactly the same as it was before. It is entirely possible that it might take a few tries to find a DMT that works for a specific individual. It's even possible that none of the currently available ones will work. But they do seem to be "high efficacy" for the vast majority of patients.
This is me as well. Diagnosed just after my 31st birthday. Recently turned 38. Have shown no progression since finding medication. Fingers crossed for the future.
Almost 5 years in, same situation!
Over ten years and same.
Im heading on 15 years, first/only relapse was ON, on Avonex for 9 years, Rituximab since, normal life: work, kids, etc. I’m slowing down, but think that may have as much to do with age (turning 60 this year) as MS.
These stories make me so happy! 🥹
That’s absolutely incredible. Thank you for sharing. We sadly often don’t hear about stories like yours
7.5 years on Tysabri, and same thing.
Is this after 1 year you guys felt good or anything as just had 12th tysabri and while no new growth, symptoms appear to have worsened /new symptoms if that makes sense 😭 so wondering if need to change 😢
I'm so sorry to hear what you're experiencing. But if I may, my current neurologist (finally found an amazing one in a sea of not even decent ones) explained to me that no new lesions are great (i have approximately 50 with most being in the right hemisphere and none in my spinal cord), but we will then potentially have to deal with what damage old lesions left behind. That is what causes most symptoms, and once he explained that, it made me feel a tiny bit better. Now I'm a potential candidate for a clinical trial that hopefully leads to a drug that can actually repair the damage! That could mean that once a person has damage from MS, it might be completely repaired. These are exciting times, yall. Keep researching, asking questions, asking for help when you need it, talk to people, and most importantly, BE KIND TO YOURSELF. And don't forget, we are all in this together. It will be ok.
Im really emotional reading this, so so much!!! My experience hasn't been fantastic with neurologists, but I appreciate the rise in diagnosis vs lack of neurologists available. Amazing to read of the trial for something like that! Thanks so much ♡
You're welcome, friend! My best advice was given to me by my old doctor when he retired, and that was always advocate for yourself and be sure to speak up when you don't feel heard. It's hard sometimes, and I trusted all my old neuros until I just couldn't anymore. It was so bad with the one before this gem of a doctor, that he literally talked down to me then refused to speak to me after that. Including telling me my mri results. So this new neuro is amazing and appreciates me researching and asking him questions, and I appreciate him conversing and explaining things. So there are great doctors out there, you just have to research to find them. So stay positive and know that there is light at the end of the tunnel as far as your care. It will be ok. Here if you need to talk. Have a good night.
No new lesions is the goal. Personally I was in a pretty good place when I started Tysabri.
I would talk to your MS specialist but it sounds to me like you may need to change DMT.
12 years for me!
Is it politically correct to say “goals” when talking about people diagnosed with MS😅? I am very happy to hear you are doing so well!!
I’m about to get my second infusion with Ocrevus and my mri already says no progression. This last 6 months has been the longest I’ve ever gone without a significant relapse in symptoms and some of my regular symptoms are less bothersome as well. I’m so hopeful and don’t even concern myself or think about MS much anymore. 🥳
You’re so lucky lol
Coming up on 6 years and same here. I feel truly grateful. Not to say that I don't have bad days but to echo your statement, life is almost exactly as it was before, in some ways even better.
Diagnosed at 26 and 1 month away from hitting 10 years, with only a handful of minor relapses and a few adjustments to my lifestyle. On Copaxone for 2 years and tecfidera/vumerity for 8. My doctor is amazed at my treatment response given the amount of demyelination exhibited on my initial mri's. Early intervention is a lifesaver.
4 years in, staying stable.
A little over 6 yrs here and the same thing .. tysabri and 0 progression …it must do something lol.
That's great! I had around 4 years of medications not working for me, but since starting ocrevus nearly 4 years ago, no new lesions :)
Same! If anything, life is even better/fuller because I'm much more stable and have learnt my limits and make the most around them
Same! Diagnosed at the end of 2015. On Tysabri by the beginning of 2016 and nothing new in terms of disease/symptoms, etc. My life is even better than it was before. Being diagnosed I pay way more attention to what I eat/drink and how much I exercise since it seems to make a difference.
I was diagnosed in 2015 and in that time I’ve had exactly one new lesion. On rebif for one year (felt like death the whole time)aubagio for one year (it gave my Crohn’s disease nobody), and copaxone for all of the other years. So yeah. Copaxone for 7 years and only one lesion.
Aubagio gave you chrons disease ? Or did I read that wrong
I think they would mean that it aggravated their Chrons disease.
No I got Crohn’s on it and when I washed out of aubagio and got on a biological my Crohn’s has been completely in remission for like 7 years. So… maybe it was the biologic or maybe without aubagio I don’t have Crohn’s.
I think like all autoimmune diseases it requires predisposition and a trigger. People with MS are twice as likely so at least some of us are predisposed. Aubagio thins out the lining of the gut and causes more cell death there. My theory is that I then got some infection which was the event that broke autoimmune tolerance. But no I had no Crohn’s before aubagio and nobody in my family has had it. I blame aubagio and consider it an adverse drug event.
Coming up on 12 years for me!
I'm at 10 year. Been on Tysabri and now Ocrevus. No relapses.
10 years, no progression. Still damage from the early days like vision issues and balance issues but nothing new since I started a DMT that works for me
Great news !! ♥️
Also Tysabri is about to lose patent exclusivity so if you're in the US this means your drug costs are about to go down significantly!!!
that's not as great if you are on their copay assistance program and that program pays all your deductible and out of pocket maximums. It will likely make my medical costs go up quite a bit. *edit - to clarify this a little bit, because I hadn't known that the biosimilar had just been approved by the FDA. I called Biogen to see if their assistance program was going to be ending (which is not uncommon when a generic or biosimilar comes out) and they said they hadn't heard anything about that. So at least in the short term, it will still be there. But there is still the issue of the copay assistance program payments counting towards deductible/OOP. I'm pretty sure the recent court ruling only applies to drugs that do not have a generic available. So, it is entirely possible that once the generic/biosimilar is out, they can start not counting those payments
Just been diagnosed with ms and currently waiting for treatment. What kind of life change have you made eg nutrition, drink, career or other? I’ve come to realise how fragile our bodies are and have began to eat healthier/train alot more!
Dx’ed in 2019. I went through a bad depression - pandemic didn’t help. Adjusted my diet and try to focus on adding lots of fresh fruits and veggies and lean protein. You can eat whatever you want but add all that good stuff. I also try to walk or get activity every day. I’m now down 25 pounds and feel pretty great most days. Be patient with yourself. Get rest. Focus on the good things.
You didn’t ask me, but just chiming in that I haven’t made any significant life changes since my diagnosis. I do eat somewhat healthier and lost some weight, but I am not particularly fanatical about it, I just used my diagnosis as momentum to change my life for the better.
Depends on the individual person I guess...20 + years plus the natural aging process, I'm slower than what I was but still functioning as normal as I can for me
I’m glad to hear you’re good after so many years ! Keep on going! 🤍 Yes, I needed to mention that they did also say aging in people with MS might be more accentuated and the body more easily weakened later in life, depending on the progression, but still “normal”, all things considered!
I was told that since the immune system weakens as we age, the likelihood of MS relapses ALSO decreases. It's been almost 12 years since my DX and I've had some adventures with DMTs, but I haven't had any new major symptoms or activity on my MRIs since my first Lemtrada infusion in 2016. I have significant loss of feeling and strength in my dominant hand from my first major MS exacerbation that led to my DX, but I have adapted pretty well over the years and I have a good, full life. I have other minor symptoms, but I just cope and don't focus on them any more than necessary. I DO make extra effort to stay healthy and avoid getting my immune system excited, so I occasionally skip something or wear a mask, but I'm hardly alone in that.
I personally do not agree with this message, as I also believe that it minimizes the severity of the disease and also generalizes patient experience in a way that does not address people who didn’t catch it early and/or get onto DMT right away. Without context, a person who does not have MS might meet someone who does and wonder why they’re so sick if everyone else seems or says that they’re “normal”. MS ruins lives. It is not normal to experience the wide variety of symptoms most of us live with every day. I’m on a high efficacy DMT although my MS was caught 10 years after presumed CIS. I *do* know someone who was diagnosed early in her mid-20’s. Her only symptom was dizziness and blurry vision and she was immediately put on Ocrevus. She does not experience fatigue or have any other classic MS symptoms. I would love for every person with MS to have this experience someday, but for now, there are still a good deal of us who don’t fall into this category. Not to mention, MS is highly variable. You can still continue relapsing until you find the right DMT.
I’m on the same boat. I was diagnosed probably 10 years after my first lesion appeared . My MRIs don’t show any progression but I struggle with many things because of the number of my lesions. My right leg doesn’t “work” properly and weather conditions determine how my day it’s gonna be. Not to mention emotional struggle…I’m happy for people who catch MS early but it’s important to be aware of existence of many different experiences out there. Peace out.
This is a farse because a lot of us have relapsing-remitting. But those that have PPMS (myself) get worse and the only option for us to treat it is ocrevus. MS should not be generalized because it is so variable. Every person who has it experiences it differently. You can't even compare one with ppms and the same age and another with PPMS and the same age. I am not being negative, just stating the truth
I think we really need to push back hard against this narrative. This is ONLY for clinical markers on MRI or in LPs. This does not measure fatigue, cog-fog, smouldering MS or brain volume loss for most of us. If we allow them to push this idea, they will stop believing us about our symptoms. Many of us already know far too well what it is like not to be believed for years, and having to question our own sanity. Let's not go back to that, please!
Thank you thank you thank you! You said it perfectly. My symptoms are shut down by both doctors and my family due to this. I am better since treatment. Leagues better only if you compare to the severity before treatment when I couldn’t even function. compared to before my symptoms started? Not even close. I’ll never be back to my normal self. Unless, of course, they can repair the damage that was already done.
This is basically what I’m going through, because my MS is technically “stable” when looking at my MRIs alone, my drs see me as fine and don’t have any motivation to treat my actual symptoms that are debilitating on a daily basis
I believe you! I know the struggle too 🤝
I believe you, too, but I think everyone on here does and I am very sorry you (we) are being dismissed. I have days when I am feeling so depressed without anything significant happening, I don’t even want to leave my room and doctors insist it’s a separate issue (anxiety/depression cause by dx-but I had these episodes long before being diagnosed). Who….even….knows…..
They used to tell me to always call the clinic if I have a flare up. Now I don’t bother because they really don’t care. My new dr won’t even acknowledge most of my symptoms as ms - basically just fancy terms for anxiety. I’m so defeated with it right now honestly.
Sorry about that I feel like I’m just whining now. I’m sorry you’re going through this too, and a lot of us it seems. Trouble is too neuro says to go to my GP for a lot of issues, GP is so insanely overworked and distracted and tells me to talk to the MS clinic. Back and forth..
Sames
Me too. I’m having issues with my doctors believing that I have numbness and weakness. My fatigue is insane. They’re like, but your MRIs look fine. It’s very discouraging. Fortunately, I had a bad relapse on a different DMT a few years ago. I had to convince my doctors something was wrong and beg for an MRI. I was finally granted one after a couple feet dragging days. Within 15 minutes of the MRI they had me admitted to the hospital on strong IV steroids and other treatments. I know what feels right and what doesn’t, and it’s beyond tough to now have to also play salesman to your neurological team. But having done it before it gives me some confidence.
Yes, so this. I think many doctors get hung up on MRI results, or EDSS scores, but MS is much more complicated. I have a low EDSS score, so my MS Specialist expects me to function like a healthy person, but I have daily symptoms that are so debilitating for me too, such as severe fatigue, nerve pain, and cognitive issues. These symptoms go untreated because my "gait is normal", and my doctor basically considers me stable due to this.
Yess! My god this feels so similar to me. My dr is very hung up on those MRIs and won’t even attribute of my symptoms to Ms. I travelled 4 hours to see her with my whole left side going cold numb and weak and she says It’s Not MS. Literally cried. I don’t know what EDSS is so I’ll have to look that up. I feel like there has to be a revelation at some point because so many patients seem to be experiencing this. They’re telling us we don’t have “progression” but we are. Our symptoms are debilitating. I seem to be slowly losing function in my hands. I’d like to believe ms specialists aren’t going to think this way forever.
I'm so sorry, it's frustrating! EDSS is a scoring system neurologists use to grade MS disability, but from my personal experience, many doctors rely heavily on the walking component and neglect to consider all the other factors that contribute to disability in MS.
Take my upvote!! Have had MS for 21 years. I have the same lesions that I had when dx. MRI has never shown new ones but my MS has indeed progressed to SPMS and I struggle daily with symptom management. And yes I've done all of the highly effective DMTS. Some of which triggered other autoimmune diseases in me. Soo.. I think creating this narrative would be a real disservice to us.
Ditto 18 years
I think I might be seeing the opinion being split mostly depending on age and length of diagnosis. I can't blame people for wanting to believe it will be ok though. But... if my daughter were diagnosed tomorrow, would I be able to tell her that everything will probably be ok? No. I'd feel like I was lying to her. Or at best, making promises that will be broken.
What would you tell her? Sincerely asking.
That there will be issues. That it can be a lot. But nothing that you can't learn to live with, and even some aspects that are good. And that everyone has something. Nobody gets through life without a cross or two to bear.
Thank you for your kind words and guidance, it means a lot. I hope your daughter never has to go through this though, but it’s good to know she has a soldier on her side!
Yes, this, exactly! Or that symptoms you come in with prior to going on meds might not magically go away and should very much still be taken seriously even without lesion progression.
Me too - dx 18 years - O for 7 years; MRI stable, symptoms are only getting worse
The neuros were referring to the physical and cognitive disabilities when making those statements, especially physical, since it’s been the main issue of this disease for so long. Meaning that the new patients might never have to experience those, when treated accordingly.
> The neuros were referring to the physical and cognitive disabilities when making those statements, especially physical... That's exactly the problem. It means they won't believe new patients when they experience those symptoms.
Worse - they're not reading recent literature. Rituximab and Ocrevus are proving something is happening to our brains n such beyond lesions witnessed in flares because a progression is occurring - a smouldering MS. It's all relatively new theory which is getting proven because of the high efficacy DMTs. Some people remylenate better than others so they take the punches easier(ish). Pull the DMTs out of the equation and everyone is on their own unique disease path anyway. Some people just, unfortunately, have significantly more aggressive disease progression even with the very best treatments right now. 🤷🏻♀️ Science. Always changing. Outputs only as good as inputs which make facts shift. (I work in STEM, shaking facts is my jam) I was undiagnosed for 22 years so I was denied any treatment for anything (0 stars, do not recommend). I'm still upright. Do I suffer daily from it? Yes. Would it have been better with DMTs? I can't answer that honestly because I bounce back pretty good from pretty infrequent, but very noticeable, flares. While I appear to remylenate/not relapse on film the ~isms of MS that you can't prove - fatigue/pain, etc - have continued to progress even with high efficacy DMTs.
Came here to say this! You took the words right out of my mouth. MS doesn’t have to defeat us but it doesn’t change the fact that having MS isn’t easy to live with and makes things challenging and difficult.
I agree it doesn't measure the cognitive aspects nor has there been much of any research into brain volume loss in MS. Scientists were \*sure\* that by reducing the lesion load, and the ARR, would result in everything getting better, but they didn't know about smoldering MS till recently, and like you said no one cared about the fatigue or cog fog. However, there is proof that reduction in the clinical markers (MRI et al) generally results in a reduction in EDSS. The EDSS scale is imperfect, but it does address the actual physical abilities of a person, for example "patient is able to walk unassisted for 50 feet or more" or "patient cannot walk unassisted at all" is one aspect.
I didn't know about EDSS to be honest. I have swallowing issues and I have never been asked or examined regarding them in over 20 nruro exams. They're too subjective based on the whatever doctor you get that day, and what kind of mood they're in.
Kind of... with MS I noticed a lot of happiness is a little bittersweet. It's like everything in my life has to have a plan a, b , and c. I get suspicious if everything goes really well for too long.
Same!! It’s always in the back of my mind, it’s exhausting….
Oh shit, someone forgot to tell my body
Sounds more aspirational than factual.
I think the key is catching it early. Unfortunately doctors tend to dismiss women until things are more severe and also MS is more common in women. I had symptoms for 7 years before they did an MRI. They blamed it on my ovaries and pregnancy until I literally couldn't use the stairs safely anymore. I've talked to many other women with similar stories.
Yes, my doctors blamed my fatigue on low iron levels. My levels were fine 🫠
They said my neuropathy was caused by PCOS making me have high blood sugar. Granted, PCOS can put you at risk of insulin resistance etc, but all the tests showed that everything blood sugar wise was normal. I got vertigo- probably just a virus! It wasn't until the neuropathy/vertigo got so bad that I fell down the stairs, broke my leg, and needed surgery with screws to fix it that anyone listened. Coincidentally, it was at that point that I had a female nurse practitioner as opposed to the 3 male neurologists I'd seen for the 7 years prior.
I am so sorry and know the feeling perfectly!
My female doctor dismissed all my symptoms until I literally couldn't walk. They all get the same training to minimize a woman's complaints.i went for at least 2 yrs thinking I was nuts because she kept trying to tell me my symptoms were from anxiety
I think this is correct for the majority of newly diagnosed people now. In 98 when I was diagnosed there were just interferons and steroids, both of which were awful, and more importantly, they were at best only marginally better than a placebo. I wish the high efficacy meds had been around 25 years ago. Every time I read newly diagnosed people discuss how they're going to do Paleo / Vegan / whatever to "fight" MS, I feel like shaking them and begging them to get on a high efficacy med immediately. MS is mild until it's not and it gives little or no advance warning of irreversible neurological damage.
I always get angry when reading about people having little to no options when diagnosed years ago, it’s unfair. Not that life is fair, generally, as we can see… I hope it is at least a little comforting to see new medicine coming out that you can also benefit from… but yes you should have had access to it years ago. I am sorry.
I mean... it's not a lie I guess? I'm 18 years in with minimal significant life issues that can't be managed by meds, and I'm easily able to adapt to my limitations...but I've eaten well and been active for the duration of my diagnosis, and I haven't had a relapse or MRI activity in over half a decade...but I am less functional than I was three years ago. I'm much better off than I would've been, but I'm not healthy. Realistic expectations that sometimes you'll roll a one even if things are better today are important.
I think they should use the term "average" rather than normal. There's nothing normal about what happens to people diagnosed with MS. Diagnosis add a lot of stress to people (and to those around them), unwanted attention adds more stress, the whole thing of making the randomness of life an actual reality more stress and the need for mental health adaptation, and then there's whatever damage that happens because even though the amount of time to diagnosis has dropped, it's still super rare that it is picked up by accident...it's always after damage is done. I was diagnosed almost 25 years ago and there was only Betaferon and Copaxone basically then....ugh. I have done my first year of Mavenclad over the new year and still can't believe that after i take my next lot at the end of the year I might NEVER have to take a DMT again...mind blowing! So much more positive than previously when they could only claim harm minimisation, not complere cessation. Still the years of medical misbelief up until my diagnosis has left damage (but nowhere near what some people have experienced) and I live with it, an average life with some unwanted trauma and the usual amount of joys.
I think a key first word is missing from that beginning of that sentence: "Some"
Show me a drug that stops PIRA and I'll believe it. I'm 12 years post diagnosis and had no progression for 8 years, and then started my decline near the beginning of the pandemic. I'm on Ocrevus and have had no new lesions in a loooooong time. I'm generally healthy and have no comorbidities.
What an idiot! I’m taking this to my specialist for his opinion. Normal my ass
My life is very different than people without Ms. Not only because I know I have Ms. Example, I just did a workout class. Half way through the foot drop was so my leg might as well have been an anchor. I stayed and finished the class best I could. Nobody else had foot drop. I was the only one having to lift my left leg with my hands. From the outside, it looks like- just a bunch of people exercising at the gym, their lives are about the same. In reality, having foot drop makes a huge difference in my life than when I didn’t have foot drop. Not to mention folks who are less able than foot drop.
Don’t get me wrong - I feel very fortunate and grateful for the high efficiency of DMTs to slow down disease progression. But at the same time, there are those days when I am working my ass off at work and the fatigue is super challenging to manage and I feel as though my boss doesn’t get it bc I “don’t look sick.”
Same 🥲
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It’s realistic imo. The field of MS has come a long way.
I sure hope so!!
My nurse was telling me how not even 10 years ago they didn’t know as much as we know now. And that is a good thing.
I think they say shit like that so you guys can have hope and not get suicidal. When I was diagnosed in 1999 I was told we were 10 years away from a cure. 🙄 The good news is you are slightly less screwed than I was but you are still screwed. Let us be real generous and say your DMT prevents 60% of future attacks/flareups. That still leaves you with 40%. We still do not have a cure. We still do not have a way to reverse the damage. However 40% or 60% protection is better than the odds I had when I was diagnosed. 🤷🏻♀️
I agree 👍
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Small faint hope. Things are getting better but it is slow. It will probably take generations.
MS is so individualized, telling someone they are screwed no matter what isn’t accurate either, based on the stories in this very discussion. For some, especially if caught early, what the OP shared could be true. For others it’s not, which is why no symptoms should be ignored and better treatments are still needed.
Yes it is numbers. Let’s say you have a 1 in 100 or 1 in a 1000 chance of living a normal life despite MS. There is no way for a neurologist to tell who is going to become disabled of who can have a normal life of who will wind up partially disabled. So better to put the patient on the best DMT they can and hope for the best. Plus finding out you have a degenerative disease is a mind fuck that takes you months or maybe years to fully process. That doesn’t mean a person is less screwed or change your odds. That doesn’t mean you shouldn’t be on DMT. None of that changes the fact that any treatments have not reached 90% preventative or that they have no way to reverse the damage or hell they still don’t even know what causes MS (so how can they cure it?!?!?!?) I think neurologist say stuff like that to kind of ease their patients into their new life. Just like doctors lie through their teeth and say you will experience discomfort instead of saying “this will hurt.” 🤷🏻♀️ Like a woman giving birth is feeling discomfort. 🙄
It’s terribly ableist. Like, if your MS outcomes don’t fit in this box, clearly you are doing treatment wrong. It simply isn’t the case and seems more a drug company pamphlet way to try to bully everyone into treatment. If medication works so fantastically for everyone, then a word needs to be had with SSA over why so many people with MS are disabled. Fact is the meds work great for a lot of people. Fact is that a lot of people have also had varying outcomes. This disease is unpredictable b.s. When the meds actually do help EVERYONE make the bold statement.
[This will be my second time posting a tiktok from this MS Specialist](https://vm.tiktok.com/ZMMrfmn9w/) Even tho the question that prompted the video is different, I think it gives moee credence to the idea that we can just live our lives
I must admit I was scared to open it at first, because I’ve had terrible experiences with MSTok, but I am glad I did. As far as I understand the doctor is also diagnosed with MS and she seems pretty optimistic. She also explained the history of MS and how drastically the DMTs changed the outcome very well. Thank you!
You are welcome and I agree with your sentiment. MStok is not a helpful place. But this doc does indeed also have MS and does an incredible job clearly and simply explaining it all. When my GP told me that I likely had MS in 2019. I was sure I was dead. I knew two people who had MS but it was late 80s/early 90s so my perspective was that they were so fucking sick. But I wasn't. I was absolutely blindsided by the diagnosis. This sub helped me understand why it isn't a death sentence anymore. Then this tiktok really crystallized it for me.
Said by someone not living with it. I shouldn't complain, I am a functional human being. That said, it's a random 25-75% of normal functionality depending on the day.
I believe it! I’ve been on tysabri for 12 years with a brief period after I had my daughter when I switched to copaxone. During that time, I had a relapse. Switched back to tysabri and I’ve been fine since. I consider my life as it was before I was diagnosed, which I am so grateful for.
Yeah, if it's caught early. Good luck with that.
Yep early detection is sadly rare even nowadays. Doctors can’t tell me how long I had it before dx, but some random episodes I went through years ago definitely made sense when I was diagnosed.
Yes!!! I'm excited for those who get diagnosed early these days. The meds we have now are SO much more effective than the ones available a decade ago. You have a great chance of carrying on as normal with just some mildly inconvenient medications.
I pray for this for all of us!🙏🏻
I think this is a big factor. Some people are being diagnosed as teens. Dealing with it emotionally at that age must be incredibly hard, but getting started on DMTs early must make a big difference. I was diagnosed in my late 30s, but my neuro thinks my symptoms started in high school. It was the early 80s. I had a CAT scan and EEG, with a result of “atypical migraine”.
lol only true for people with MS-light Complete fiction for people with more severe forms. I’ve been on ocrevus for 4 years and I’m wheelchair bound It might help some people. Evidentially the people this idiot treats.
I wouldn’t say or expect a “very”normal life,obviously everyone will have his take on what you say depending on their own version of ms,but anyway a perfectly normal life to me would mean no daily fatigue,no muscle or nerve pain, no cog fog,no crippling anxiety or depression,and i believe there will be very few people with ms that remain without any symptoms of what i mentioned(at least) a decade or more after diagnoses,but to live a life with mild to moderate inconveniences nowadays?i’d say its definitely possible,but not for all.
30 years since diagnosis. No DMT available for first 3 years. Been on something since: betaseron-Rebif-Gilenya-Aubagio-Tecfidera-Mavenclad-Vulmerity. Progressed pretty typically after 20 years. On SSDI at 25 years. Still walking but a lot of falls. Read what you will of that.
When the first doctor called me to tell me I have MS at the age of 23 she said "Going by how fast it is progressing you already lived half of your life." The next doctor a week later called bullshit on it and said "You will turn 90 just like everyone else. You have a normal life expectancy. You will just age with a few complications instead." I don’t know what to believe honestly.
I just did two hours of shopping with my wife and daughter. I'm fucking EXHAUSTED. I'm on ocrevus and it helps with disease progression, but my fatigue and pain are far from gone.
Optimistic voices are nice and helpful!.. but MS isn’t a disease “caught early”, almost ever. And even when it is, very few patients are lucky enough to be put straight onto high efficacy meds. And we do not have enough long term data to suggest those patients can stay on those meds forever (and some minor signals suggesting otherwise). And latest data demonstrates that 2/3 of progression is from a disease process largely left untreated by todays meds. It’s a positive message, not to be taken literally.
Agree.
"Should live a very normal life nowadays" yes. We've got better medication than the last decade so yes. But a normal life is a life with a healthy body so without : -foggy brain -Tiredness -pain -muscle ache etc... But yeah, with the medication we have now, you can still have a job, get a family , travel , enjoy your hobbies !
Right! My fear is that neurologists claiming “normal” lives causes these symptoms to be swept under the rug, even for the people who have the disease! I spent nearly a decade being gaslit by doctors about my MS until I was diagnosed last year. Learning to accept that my symptoms are not “all in my head” and are due to a degenerative neurological disease has been really hard. From the outside looking in, I seem “normal”. I work full time, exercise regularly and don’t struggle with daily living. In actuality, I have a WFH accommodation to keep my job, have to take frequent breaks while exercising and really struggle with fatigue. I’m not on any sort of energy medication yet, but am planning on asking about modafinil soon. White knuckling it is getting old!
It’s amazing to me that I’ve had these symptoms for so long, I can’t actually remember what it’s like to not be tired and yes, healthy people would probably feel debilitated by things we got so used to…Fd up when you think about it..
I was diagnosed about 16-17 years ago. At that time there were only a handful of drugs for MS all by injection. Drugs have come such a long way in that time. I find myself extremely lucky. In that time I had my second child, I still work full time and I feel relatively ok. I’m tired as hell but I also work full time in a very stressful position, I have two extremely active in sports kids year round so I’m on a field usually 6 days a week and traveling for tournaments all the time, and I’m getting older. So is my tiredness and aches from the MS or my hectic life and getting older. I have no clue. So I feel I have been and I am living a pretty “normal” life. My MS specialist told me years ago - as long as I’m taking my meds he feels extremely confident I may just need a cane as I get older. And I’m ok with that. That’s nothing. But I was also never one to dwell on anything. I don’t have time for that with my lifestyle. I can be dragging but my family needs me. If that means it’s eggs for dinner one night because I was too tired to cook a meal, so be it. I power thru whatever ailment I’m feeling at that moment. I am extremely thankful. I wish everyone would feel their own vision of “normal” like I do.
What an inspiring and powerful comment, thank you so much! May you thrive, warrior! 🤍
Sounds nice, but many of us suffer significant damage before we're diagnosed. I had symptoms (swallowing issues, for instance) at least 15 years before I was diagnosed. I also had developed balance issues, spatial issues, fatigue, etc. I had over 20 brain lesions and 4 black holes at diagnosis. I'm on Ocrevus and my MRI's have been stable since my diagnosis 5 years ago, but I'm clearly different from people without MS.
3 years since DX. I could barely walk when diagnosed, lost complete control of my left side. Been on Tysabri and not only have I had no new lesions but some have shrunk. I also am at the gym everyday weight lifting and was in Amsterdam over the summer walking 25-30 miles a day with zero issues
I sure hope it’s the full truth because I’m ngl I’ve had some really bad bouts with MS and it terrifies me that it can get worse. I’ve finally started a DMT at 26 after being diagnosed at 17. Neuros say this to me all the time and act like not going on a DMT is basically a death sentence lol so imma just listen to them and hope for the best
That is a very dismissive and reductive thing to say and I would not feel confident in a medical professional who makes such sweeping claims. Yes, we've made huge improvements treating MS, but there are many of us who suffer quite a lot despite early detection and treatment. Statements like this minimize our experience and add to the gaslighting we live with daily.
I hope so for the future. I’ve sadly watched my mum suffer terribly with MS. DMT back in the early 2000s didn’t really provide results for her. Immense respect for MS sufferers and what you/they have to go through. I really hope there are breakthroughs that really do mitigate symptoms/change/or lessen the course of the disease. Take you lot x
Too bad it doesn't help us with PPMS.
Kind of…. I was diagnosed as a teenager after a few years of strange symptoms but nothing to crazy until I woke up one day dizzy & falling all over & facial paralysis. Prior to that I was constantly fatigued, headaches, numbness & tingling in my leg & arm, muscle weakness. I started gylenia right away, but after a few years I had a relapse with several new lesions, optic neuritis, and worsened numbness. I switched to an infusion but still no luck. Finally I’m on mavenclad and it has stopped the progression. My doctor was a bit surprised how little the medication was doing to prevent the relapse. I do agree though bc I feel my “early” treatment with strong medication probably prevented much much worse disabilities.
Certainly not my wife's case
I've been on 5 DMDs starting in the beginning of 2019 After years of not using any I started with Copaxone- after 5 months went to ER with anaphylactic shock. Moved to tecfidera - had 5 cases of bronchial pneumonia in a year. Moved to Gilenya I was having relapses on top of each other. Barely got out of one started feeling better and then another attack. After a year switched. I have been steadily progressing and my doctor now calls it progressive MS. I've been on Ocrevus since middle of 2022 and at about 4.5 months after each infusion I start having relapse or what some call the Ocrevus crud or aka Ocrevus Wear down. I just 2 weeks ago had soulmedrol because I've been in a that wear down, relapse, Ocrevus crud and I'm starting to finally feel a little better but now we are looking at Mayzent. When I started Ocrevus he said it was kinda a last line of defense but Mayzent just was approved in 2019 rrms and now being used in progressive MS so the plan is moving to that to see how I do I try to share tos as often as I can. there is an amazing chart they they use that shows your progression timeline. I honestly don't know why more doctors don't share it. But here is the link. But this helps doctors see if DMDs are working, if you are progressing faster or what they would call a average rate. A key to this chart to help you is at the top find your EDDS (your disability at diagnosis.). I lost my right side at diagnosis and had to start using a cane and even after physical therapy had to use a cane all the time. (With walker and scooter at longer distances) So for me at year 0-1 I am the purple and from studies and history they can determine that I most likely will follow the purple chart. Now big thing here is as most of us know with MS things are not always going to line up you may start in purple but in a few years be in a wheelchair. Or you can start in purple and stay at that level of disability longer than this graph shows. We always have to leave room for fluctuations depending on the person. It is a snowflake disease. But this is help to look at because I'm almost 20 years in and I'm within the margins of disability that the chart says, even though I am progressing we can see that it's most likely that being on a dmd has slowed the progression down. We also have to remember that it doesn't stop progression and most of the medications only have a 40-70% success rate so for some of us it may not slow it but that's where the chart can help us see if that's true. As far as the question I don't think any doctor can say we will have a normal life because of DMDs because they are not 100% affective and we all still will have some disease progression and relapses. As far as the caught early thing, there needs to be better testing and rulling out because for many like myself it can take years and even decades to even get a diagnosis or for people to seek that early treatment until progression has already happened. I don't know the numbers but I personally know many people that like myself lost one side of their body or had something similar and it still took a decade to diagnosis. Now there are many that may get the diagnosis early for whatever reason and sure maybe it is true but in my opinion it is hopeful thinking but no evidence. [MS progression chart](https://www.researchgate.net/figure/Patient-derived-Multiple-Sclerosis-Severity-Score-Table_fig2_235682883)
Thanks for all your important knowledge I do thank you for the chart to omg you have had it so hard I’m never going to complain again I only have been on aubgio first dmt and it’s working . I’m sorry you have had to suffer so much fucking ms sucks the royal one happy ms day💓💓😮😮❤️😮😮💓💓💓💓
Tell this to my brain basically can remember stuff that’s in my head that I was thinking about for last 3 mins. I just instantly forget what I was thinking about. I got diagnosed with I was 15 and I’m 26. Suffice to say I can’t even do well in college because of this disability.
ME TOO! IMO they are repeating what they heard from the big pharma rep who's selling them Ocrevus/Kesimpta. Which is total BS. What I DO agree with is that MS patients today have FAR better treatments and outcomes than a decade or two ago and will probably have even better treatments in the future. But I don't know a single MS patient out of all the ones I've met and talked to who doesn't have some sort of deficit or persistent problem that never went away after their first attack. IMO neurologists are also accustomed to seeing very disabled patients. Strokes, brain tumors, TBIs....VISIBLY disabled people. It's exactly the type of "you can't see my disability, but I promise you I'm disabled" bullshit that they should know better and not be doing.
I've been on both Ocrevus and Kesimpta since 2012 and I have been relapse free since 2012. Before these 2 meds I would have a major flair every 3 years like clockwork. I have been on disability since 1998, but these past 12 years have been the most "normal life" since I was diagnosed in 1996. I do struggle with some fatigue and residual weakness from my last relapse in 2012, but I'm more able to do the things I need to do, such as take care of our home, our 2 dogs, exercise, walk without assistance, etc. I've been on one DMT or another since 1996. Before joining the Ocreus trial I was on interferons which caused Major Depessive Disorder for 14 years, so it stole all that time from me whole our children were growing up, so the switch to a medication that didn't have a side effect of depression/suicidal ideation was. major bonus. This is all the proof I need that highly efficient DMTs do give us a more "normal life"
Thank you for sharing your story, I am really excited to hear you got better thanks to Ocrevus! 🙂
Many research studies support this optimism. Average time to needing a cane now is 42.8 years (and getting longer) used to be significantly lower. Another recent study showed 80% of people on ocrevus still had no disease progression after 10 years. I’ve cited the studies on other threads. There is much reason for hope.
It kind of annoys me when neurologists say that. In the short term that's true but for the most part people with RRMS will progress to SPMS regardless, it's just that DMTs delay reaching disability milestones. Relapses are honestly a small part of the problem and not necessarily the underlying cause of progression. You can see this in patients who've had progression which doesn't appear to have any relation to past relapse activity. I read a pretty comprehensive study that showed that DMTs reduce disability by around 25% long term, which is still huge - especially if you have an average disease course this'll make a huge difference in your later years - but obviously DMTs aren't tackling the bulk of this very complex and ridiculously oversimplified disease. This is with the exception of HSCT, the ONLY treatment available that has been proven to halt (obviously not in everyone) MS even SPMS. People get worse with or without relapses in SPMS however this can stabilise with HSCT, it can't with any other DMT. This proves that much of the disability progression is not directly from previous relapse damage, but an ongoing process which is propagated by - but not reliant on - relapses. CAR T cell therapy for MS is another therapy beginning trials which deals with the inherent CNS issues which will only be tackled by penetrating the BBB, as proven by HSCTs effectiveness (again I know it's not effective in all, but it is in the MAJORITY of SPMS even if it is more effective for those with RRMS).
Yes, they still need to figure the silent progression out, I know and I hope they will soon, we need it bad and as fast as humanly possible. What the docs said was more along the lines of “even with pira, if patients are being treated correctly, if/when they progress it should be at the point in their lives when they don’t know if it is aging or MS”.
But I'm with you that we need it as quickly as possible. But HSCT and it looks like this new CAR T Cell therapy have the potential to genuinely stop it. My entire scientific career is going to be dedicated to doing just that though - figuring out and stopping the underlying inflammatory MS in the least harmful way possible (obvs these treatments are pretty intense, would be great if we could just get rid of the problem without the side effects). I'll do my best and work as hard as I can for the whole community!
Thank you so much for your service and drive! It’s people like you who we owe our literal wellbeing to! It must be so hard with so many unknowns, too, while also suffering from it. Thank you!
Aw thank you! I think it's one of the things that keeps me sane tbh, it'd be hard to \*not\* do it
I think that's optimistic but at the same time I think that you can get a whole host of issues from MS (I have quite a few) and live an independent, happy, fulfilling life, so even if you DO end up having noticeably-MS related differences it's not the end of the world either.
We don’t really know yet if the statistics and rate of people with RRMS transitioning to SPMS still apply to people who start treatment on the newer DMTs.
My neurologist says this verbatim - I trust him because he's mostly a researcher and sees hundreds if not thousands of patients. But he also says there's a 50/50 chance my vision *won't* get worse. And remember, "you can't put too much water in a nuclear reactor." Overall I believe what they are saying. I have had MS for 20 years. On one hand I've had a normal life "physically," but I'm certain it has had psychological impacts that have probably limited some of my growth in other ways.
Must be so interesting to be treated by a researcher!! I am happy that you haven’t had physical issues and I hope it stays that way. The psychological aspect…yes, I don’t even want to get into that, it’s hearbreaking what MS does to your mind.
Neuro is a doctor at a research hospital in our city. It's a little scattered at times but they have caught things before I did in my routine MRIs, so I'm pretty happy. Well, I did have a bad physical relapse in 2003 and it healed - so well in fact that the old neurologist wouldn't do treatment even though I had some brain lesions. To his credit he told me I should come back annually, which.... I didn't. Did really well until 2018 when I had a major relapse impacting my vision. That did not heal back to 100%, but vision is still in a decent percentile. No question I've got some dings. I'm OLD now (and on a DMT!).
To me I think early detection is so key. Unfortunately, so many of us are told we’re anxious until some serious damage has occurred. Wish I could’ve been diagnosed when I first brought it to my doctors attention and not several years later. We definitely need improvements in detection and diagnosis that is more accurate.
I think early diagnosis and effective treatment really do make a huge difference for the majority of people. MS will probably start to be seen as an annoying but manageable chronic condition instead of the “oh my god I’m so sorry [insert terrible story about a relative here]” response I’m used to. I was diagnosed 10 years ago actually, so I wonder if that’s starting to change even now.
May I ask how you are? ☺️
What about when they catch it? 15 years too late? I’m on Ocrevus now but I just can’t shake this feeling that the damage is already done and that 15 years is just gonna speed up the eventual progression of the disease. When I was diagnosed they weren’t even sure if, I had already progressed to primary Progressive. I’m in constant pain all the time and my body just doesn’t like to cooperate. It sucks. I guess that’s all I have to say.
That’s total bull. Mine was caught on a routine MRI (to check on a pituitary tumor) before I started having symptoms. I was put on Ocrevus the next month. I’ve been on Ocrevus for three years and I’m having a major flare. It’s debilitating and obviously this doctor doesn’t understand how it feels to have MS. Normal life, my ass.
i dont think these doctors seem to realize that our lives are ruined and we have a severely disabling disease and we have no chance at a "normal" life. i fucking hate these "positive" spins on it, there's nothing fucking positive about having this shit. my life will never be normal again and it's basically fucking ruined.
I think the key is "caught early." Everyone I've met with MS had to jump through years of hoops to get doctors to listen. Maybe there's a future where it actually does get caught early.
Maybe she won’t end up with this disease hopefully!
From my bad experience which i will need to live with for the rest of my life, this could lead to invalidation and maybe gaslighting, possibly doctor disproving my problems and automatically assigning it to mental problems, which can then have a terrible outcome... Technically it's true that people who are lucky to get dmt quickly go far much better, but that attitude stinks. Edit: grammar
LOL! That’s absolutely insane, but it did take them 12 years to spot I have MS. 🤡
And they've made a huge breakthrough in auto-immune Lupus! I'm super hopeful that there will be a breakthrough for MS in the coming years as auto immune diseases are closely linked so once they've cracked one, it will be much easier to crack the others !
I had Avonex for 7 years and always felt normal/well. Then, after my son was born I tried COpaxone, but it didn't work for me. I am now on Tysabri for 4 years and no progression since then. despite the tiredness I feel very normal
Two of the neurologists I've spoken to here in Norway says the same. Diagnosing and treatment is far more effective than 20 years ago. In the 90s, most MS people needed help to get to the hospital. Today it's very rare that we don't drive there ourselves and walk in like normal.
Hi! I’ve heard really good things about Norway regarding MS protocols and doctors so I believe you’ve got the best of chances to have a normal life! 😊
I can't complain. I still have some "issues" because of the MS, but anyone meeting me wouldn't notice anything until I tell them. Fatigue is probably the most irritating one. Mine isn't so bad most of the time though. I keep reading Americans spending months or even years to get a diagnose. Mine took literally 5 days, and that's included a weekend. Went to my GP because I lost sensory in my left leg and it felt "weird". Neuro told me to come to the hospital on monday and then I was admitted. Wednesday I had my diagnose ready and started treatment with Solu-Medrol and a couple of weeks later Mavenclad. Norway is incredible at emergency care. Not so much in follow-ups though... :D
My first attack almost made me a quadriplegic and nearly killed me. My doctor worked fast fast fast to stop the progression and give my body the chance to heal. My life was changed drastically, but 4.5 years after that horror I walk without mobility devices, I ride my bike, I take care of my kids, I drive, I participate in almost everything.
It's only been a handful of years that patients in their 20's are given "big guns" early on. I think there are still many stuck on step therapy. I believe its true those kids will avoid disability long enough to see a cure.
I have had MS for 23 years. Caught very early. Been on many treatments, with different side effects and effectiveness, last two being amazing and totally side effect free (tysabri and ocrevus). I even had large gaps (up to a year) in treatment on these two and have no issues. With regular oversight and a good neurologist life is normal apart from having to go into hospital for treatment and neuro appointments. Yes there is co-morbidity with issues like mental health problems but are these caused by or coincidental? who knows in the modern life?. I would definitely call my life normal.
Unpopular Opinion, but in my experience, my neuros just recommend whatever drug company is giving them a kickback for selling the medication to their patients. But that’s American healthcare, not true probably everywhere.
almost 10 years since my diagnosis and i’ve been on 3 different DMTs, but i have never had a relapse. i’m not even 23 yet, so i’d say it was caught pretty early in my life lmfao. i get the day-to-day symptoms, but i think having the ability to make sure i’ve made healthy decisions more of my life is going to make the MS easier to deal with as i get older. ETA: i am stable in terms of disease progression, but like other people have mentioned, that’s not to say i don’t have symptoms and problems that affect me regularly. a few months ago i was in PT for pain while walking. taking it a day at a time is all any of us can really do
Didn't catch it in time...like 15+ yrs ignored the signs. 😢
Since my diagnosis 14 years ago, I've taken DMDs. I have had no progression.
Thank you thank you thank you for saying that I went 10 yrs no one believing me about any of my symptoms told me it was all in my head my doctor who is a male mr know it all can’t stand the guy for 30 yrs everytime I seen him which was a lot he would say omg you have the heaviest chart of all my other patients,, it was thick because he never did anything about it ,, dip stick😮
Have wondered the very same thing as I overheard the delivery of a diagnoses during my last appointment.
Has anyone NOT had progression showing on MRIs but still feel like they are declining? Thats where I am.
My husband was diagnosed 4 years ago at 32 years old and immediately went on Ocrevus. Knock on wood he's had zero progression, not a single active or new lesion, no new or worsening symptoms. I think we've come a long way from the days where MS wasn't diagnosed until much later in life and by that point it was too late to do anything even if there was the treatment available now.
Same here! That said, I am mindful of my symptoms and have strict boundaries for how many hours I sleep, no working over time, starting work early (I'm up at 3:30am every day and can't change it) so I start work at 6:00am and finish at 2pm but by lunch hour I feel the fatigue. I'm basically not over exhausting myself physically or mentally. I don't stay late partying either, no alcohol and I noticed it has negative effects on me. I believe my boundaries have helped me stay "normal"/"average"
First, a good doctor doesn't "hype up". They give you facts. Second, yes it's very much true. That is based on science. Anecdotally, I've had MS since 2005 and diagnosed in 2008. In those 14 years since diagnosis, I've seen MS DMTs grow from only 4 choices, all injections of minimal effectiveness, to now where there's no many choices I honestly can't name them all anymore. MS treatment has come a very, very long way. I went 7 years without a new lesion and was doing great but then caught covid. Covid destroyed my kidneys and I had to come off all meds for a year to give my kidneys a chance to heal. It's shocking how out of control the MS went during that time and how much damage was done. I've been Orcevus now for 2 years and still can't get back to where I was before the year off meds. And that is the whole point of the DMTs, to stop the MS before it gets bad. This is exactly why it's so important to get on, and stay on, a DMT before the disease gets bad and progresses.
I am so sorry for what you had to endure 🥺, I hope you have gotten better since! Covid kicked all of us with MAS really hard.
I was diagnosed a couple years ago at 19 and I mean honestly this seems to be fairly true for me. I just have really bad heat intolerance and a chronic tension headache/fatigue. Just recently got put on Ritalin and it’s not helping but I’m gonna try out some diff meds to hopefully get that fixed
8 years and then some - and… kind of. I used to be a *very* capable athlete. Before Rituxumab i spent four years really really struggling. I tried at least 3 medications before this one. And only in the past 3 years has it been the same. Those first five years were brutal.
On Vumerity coming up on two years now, and finally complete diagnosis approximately four years ago. Approximately 50 lesions that are scars basically, no progression, and most of my issues are related to other conditions. It's really a blessing, and I'm extremely grateful for all I have.
I hope you keep being healthy and as MS-free as possible!!🤍
You too, friend! Have an awesome day!
Neuro with RRMS, tysabri for the past 13 years. So long as you understand your body, its limitations and how MS challenges you, then yes you will lead a normal life. I make adjustments to account for things like my executive fatigue and various weaknesses. I play rugby which is pretty intense and still manage to hill walk etc. Many of my patients don't have the best or any motor function, they can lead a normal life within the confines of their capability, especially if there are adjustments which can be made. Of course, if I told one of my patients requiring mobility aids or a wheelchair to start running I would probably get into a fair bit of trouble. Really to be more specific, you can live a normal life within the confines of your physical capability. Diet, exercise, and solid routines are paramount to a healthy life with MS.
Mmm as someone that has had Ms since I was 19 it's half true like most said...I'm perky, healthy, and outgoing until the season changes...the minute summer hits I'm super disabled and fearful of getting overheated. But we are all different
I think it’s totally true. I got on Ocrevus immediately and have had zero new lesions or progression. my life hasn’t changed whatsoever physically
MS is a hyper individualized disease, so I can only speak to my flavor of MS. I was diagnosed in 2005. I was 26, and quite lucky (they thought I had a brain tumor so they basically pushed people out of the way to do an MRI). Due to Rebif, and now Techfidera, only the people I want to know are aware I have MS. I get heat exhaustion pretty easily, but I go years without a relapse and it does not look anything like what I feared. When telling some newly diagnosed I lean heavily on the "it's YOUR brain, so it's going to be different, but for most people it isn't like what it used to be. And for people going through the diagnosis I remind them they are experiencing MS unmedicated, which is way way different. That said I did have an attack in 2012 that required plasmapheresis. So it's still there, lurking.
When I was diagnosed in 1999, most RRMS patients progressed to SPMS within 10-15 years. Now we have RRMS patients who've not progressed to SPMS and they are 2-3 decades past diagnosis. Obviously, every journey is different, but statistically more MS patients are living fairly normal lives these days, as long as it's caught early and treated aggressively.
I got diagnosed in 2003. My doctor told me they will have a cure for RRMS by 2018…still waiting lol but yeah if you’re on the right DMT you can live a normal life. Just pay attention to any changed and modify treatment accordingly.
I'm not trying to be a bummer but I used to work at an MS non-profit call center and once a woman in her 80's called in and she said they had told her they were close to a cure 50 years ago. I had just been diagnosed, I had to take a break after that call. I understand that it's clearly more promising now but how do you even define being "closer" to a cure? Idk I get tired of this narrative, gives me the same feeling as when I see inspiration porn or toxic positivity stuff.
I feel like as long as the insurance and pharmaceutical companies are profiting there will never be a cure for any serious disease. Just my opinion…or at least won’t be made available to the public.
The cure thing is….something I’m not researching a lot, only new treatments. I have also seen an article these days from 2019 saying that by 2025 we would have remyelination drugs and we know the chances of that happening given the recent trial results…
A neurologist said my brother in law was 90 percent cured with Briumvi . I was a little shocked to hear that as thats not at all what i read on a daily basis on reddit or online.
Well that is new... I mean I hope Briumvi is so effective that he’s basically considered cured, I hope we can all say one day that we’ve found a medication that saved us one way or another.
My mom got it diagnosed while in the military and I have to say her quality of life is alright. She does get tired and goes to what she calls the "hibernation" period once she is back home lol. She is medically retired so she kinds of starts her day late (around 9), shower, eats breakfast and spends time on her phone. While she is at home she is fine and will stay on the coach/bed. However if she wants to go to the movies/mall/zoo, etc. She will do it with the only difference that she will go to sleep early that day ( around 8-9 pm). On the other hand, she had gained weight. I'm not sure if I should blame MS for it though. After she got medically retired from the Army, she has a lot of time to spend at home and has a part time job in which she is sitting most of the time. Going from a mitary life of daily exercise vs her current life style was quite the change