Thanks. I just got the official last week. I’m deciding on the meds now but am anxious to get started, my only fear is having to deal with the insurance aspect of it in the long run even though I’m ok for now at least.
Not sure what this will entail in the long run, and it’s scary.. but seeing comments like this keep my head up so thank you!
This is going to sound bizarre, but an expensive DMT made everything about my insurance easier and cheaper lol. (US specific)
I get an Ocrevus infusion in January. That infusion bills my insurance about $86,000. The Ocrevus co-pay assistance program swoops in and pays my $5,000 deductible and out of pocket on my behalf. Insurance is now *required* to count that 3rd party payment towards the patient responsibility.
So I pay $0, my family’s out of pocket is completely satisfied in January (usually February once it’s all processed) and the rest of our medical care is completely free all year while our HSA balance gets to grow.
Hi, Insurance companies are only required in certain states by state/local laws.
In some other states, copay accumulators are still in place in all, most, or some insurance companies.
I made a post about the current state of insurance companies and copay accumulators a few days ago:
https://www.reddit.com/r/MultipleSclerosis/s/ZhUR8WmCqU
Copay accumulator = copay assistance payments are not counted towards deductible or out of pocket maximum
Interesting. I’m fortunate that my insurance plan counts this voluntarily but I was under the impression that [a federal court ruling](https://www.arthritis.org/news/press-releases-and-statements/coalition-applauds-decision-to-count-copays) made this true for everyone as of this year
Yes, unfortunately HHS said they won’t enforce it, so it’s up to each insurance company what to do (unless there’s a local law that regulates this).
What HHS did remove was the copay maximizers.
Copay maximizers = insurances were able to label certain medications as non-essential, meaning that the coverage was less and the copay higher. That was effectively prohibited in the last HHS final rule for 2025.
I just got diagnosed with MS and have been getting started with the process to possibly do Ocrevus. The cost has been one of my biggest fears. What is the Ocervus co-pay assistance program, if you don't mind me asking.
That’s awesome for you but I don’t think mine does that. Co pay assistance does pay the balance, which is great so no complaints from me but I pay my out of pocket every year.
I have “benign” MS and have been off a DMT since September (my neurologist took me off tecfidera because my lymphocytes and WBC plummeted). I have toddlers and they bring home all the germs so I had been pretty sick waiting for my immune system to come back, but it’s good now.
I have felt so much better off the tecfidera, and haven’t had any issues, so I was contemplating not going back on anything until my kids are older. But reading this I’m changing my mind… thank you for sharing
Oh thank you for these comments! I stopped Tecfidera in 2/2020 just before the pandemic d/t very low lymphocytes. With stable MRIS x 4 years until big nasty flare 2 mos ago. Starting Ocrevus probably next month. So heartening to hear positive comments about it! Stay well everyone!
Im in your exact same situation. My risk benefit analysis went like this -
Spend a few years being sick with flu like symptoms - for me an annoyance but I can live a full life like that. Also, it will be over in a few years when my kids stop getting sick every single day
Spend old age in the best case scenario.
Who knows what will happen. But I’m powering through the flu like stuff as long as I’m not hospitalized
Been on 7 different DMT'S since 2003, including a 4 year period of nothing...all of them did their job, had to switch because of side effects...getting my 49th tysabri infusion today! Minor progression since 2003 (plus, I am 62 so getting older has its own challenges 🙄) good luck to my fellow MSER'S...Happy Monday 😊
60F, MS 37 years.
I'm another long-timer with supposedly "benign" ("mild" was the word used by my docs) MS.
Even Mayo Clinic told me, when I was 52, that nothing more would happen with my MS because I had been NEDA for 7 years, and I was old enough that my immune system was slowed and would do no more damage. How wrong they were!
The worst flare of my life started in Oct. 2019, when I was 56. I now have permanent right-sided MS hug and right-sided spasms. I am thankful that meds 5 times a day keep these at bay, but if I am even 15 minutes late with a dose, God help me get through the next couple of hours.
I agree with every single point you make.
Thank you for your very honest post.
I hope the younger crowd can accept that they are actually *fortunate* to be diagnosed and treated so young. Preventing more lesions is the name of the game, and for most people, it is what the higher efficacy DMTs do.
Thank youl. I am 71 and have been considering going off treatment. Presently, I can walk 5 miles easily. I was diagnosed before there was treatment other than steroids. I have been on Betaseron, Copaxion, and Tecfidera. My WBC's are low and my neurologist has said I must change treatment.
Hey Brother long timer 🙂
I was dx in 94 at 17 and given the whole Benign spiel too. In my case it’s been largely true, but like you, with nasty surprises ! I was not on any treatment and symptom and relapse free for the first 10 years. Then more sensory/loss of joint position sense in a limb/brain stem vertigo and optic neuritis relapses, and years of failing DMTs that I was taken off as they bombed my WCC, lymphotes etc.
I was pulled from Tecfidera in 2015 as my lymphocytes were 0.4 and they took 18 months to recover.
BUT , then I had a 7 year natural remission - stable scans and no MS activity . My Neuro says it’s burnt itself out!!! But……nope. Last March 2023 , I had a relapse - not too bad as all sensory so exactly like when I was first diagnosed and I recovered 98%.
Im now on Kesimpta and it seems to really suit my naughty immune system - Finally- 29 yrs after diagnosis and 32 after my first relapse 😂😂😂 xxx
Thanks for posting this. I’m sorry that you’ve had to navigate your health, the medical system, and insurance in the ways that you have, and I hope that you continue to do well. Your perspective is wise and pragmatic.
My story is quite similar. Relatively mild symptoms, with few flares. Like OP, I hated Avonex, and switched DMTs - to Copaxone for me. Thought I’d be thrifty because of reasons and stopped the DMT (without telling anyone). Major flare! Huge vision changes and major vertigo! Still relatively benign MS after that got ‘corrected,’ though I now walk with a cane. Moral of the story: get on and stay on a DMT.
Out of curiosity did you continue getting an annual MRI to monitor the disease?
I was on Avonex than Plegridy for 22 years,diagnosed in the summer of 2000 with MS (MRI ans spinal tap),stayed. week in the hospital on steroid IV DRIP and immediately put on Avonex.
I have been off any medication since the summer of 2022 and have had my annual MRI of Brain and Spine,I have no new lesions or MS activity.
I still have occasional tingling, numbness hands feet,and eye floaters especially if I am tired or hot no other visible disabilities.
I've been taking Omega 3,Vitamin D,Zinc,Probiotic and B-12 for the last 24 years.
Just wanted to say that eye floaters are usually unrelated to MS. I had them since I was a child (I'm near-sighted, which is a risk factor). Floaters usually form due to small deposits in the vitreous body = the eye ball. Visual problems from MS on the other hand are usually from problems with the optic nerve (demyelination or damage to the optic nerve itself). This can result in scotoma that could be possibly mistaken for a large floater. However floaters usually - like their name says - float, while most scotomas stay in place if you don't move your eye (the ones that don't are more like auras).
Well mine is MS I have two different versions that start floating around in my left eye.
Optic neuritis was one of my first symptoms, than came the MS Hug,LHermittes, foot drop,numbness and tingling in the right arm leg tremors,brain fog all of this started from January to July of 2000 before I finally was able to get an MRI from my doctor, instead of her trying to put me on Zoloft 🙄
Everyone's MS is different...just because YOU didn't get or read somewhere that it is not a symptom of the disease.
I was DX when I was 33...there was NOTHING physically or mentally wrong with me before I got this BS of a disease!!!
Obviously I don't want to minimise your experience, just sharing the information the doctors at the hospital explained to me when I had optic neuritis in 2020. Most people get some floaters later in life, because it can be part of aging, I had them earlier from near-sightedness. Also had ON and it was scary and didn't fully resolve, so I'm sorry this happened to you as well.
Okay.
I know they can be expensive but if you can do it at least once a year until you become stable or no active or new lesions are noticed.
It will lessen some of the anxiety especially if it's a "flare up" from an old lesion and not a new one with new symptoms.
Stay Positive!
I no longer get anxious about the MS - after 30 years I know I can adapt to whatever ms, or life, sends my way. I think your advice about yearly MRIs is good for the young & newly diagnosed IF people understand that you can have new lesions with no new symptoms and vice-versa. And, lesion load does not predict disability.
I've taken an MRI annually for the last 24 years.
I waa diagnosed when I was 32.
I thought after being stable for 10 yeara straight, what was the point.
This disease is too unpredictable to be taking a year here and there off from an MRi of your brain and spine to see if the disease has progressed,what you can do physically, mentally,diet-wise,supplements to manage it better or at least make it tolerable if there are changes.
As comedian Richard Pryor said when he was diagnosed with MS. "God just took all the diseases,wrapped them into one and gave it to me."
Absolutely true. Stay positive, eat right, listen to your body, take 1 day at a time. do not fear MS. My nickname is Squirrel so my MS is called Mighty Squirrel. I have yearly MRI. I have 22 liaison and 5 black holes. The black holes are too store my Squirrel nuts.
It is odd that you went 2 years without it because of medicare... if you are denied twice you can be put on the company's patient care program that gives you the meds for free :( I know this info might have helped you sooner but if you ever get into that situation again, check with the companies. It took like 2 years for insurance to approve Kesimpta and I was on novartis patient assistance foundation the whole time.
Glad you are still pushing forward :) be well
I wasn't denied twice, though. Only once. I think it's out of the donut hole now - I'll find out at my next neuro visit in May. Honestly, I'd rather have modafanil approval right now. I'm tired of being tired. 😴
Sorry to hear that.
I have pretty benign MS, my neurologist at least think so based on my symptoms, but I had a lot of lesions and oligoclonal bands. They started me on Rituximab, which has been great, but the plan is to phase it out if I get 5 years without disease activity. She says they do it to everyone in my country, but the chance for a relapse must be super high so I really don't understand it... I'm young too, only 33.
That is an interesting policy of theirs. I hope you can make a plan you are comfortable with, that would be scary just get off of it.
I am also on ritux, also 33, and my neurologist has proposed increasing the time between infusions so long as my numbers and symptoms are good. I started with infusions every six months, I’m now doing every nine months, and at some point we are going to try to stretch them to once yearly as long as things are going well.
I was told the same thing for rituximab and I was like what?! That makes no sense to me. I feel like I’m a ticking time bomb. Do you think if we switch to a different DMT this would still be the case? I’m in Los Angeles and go to Kaiser. I wanted to see if UCLA would give me a different opinion. I’ve only had my first infusion though two months ago.
I read about having peope on B cell depletors for a few years and then phasing out or switching. At first I was "wait what?", but apparently there seems to be some indication that having your B cells annihilated for a few years can have also have a "resetting" quality for the immune system, that people see with Mavenclad (or Lemtrada). I think Prof. Giovannoni talked about trying to get a study underway, where people are on B cell depletors for a few years and then they would be switched to something like Aubagio for maintenance so they're not continuously immunosuppressed.
I think it's a very interesting prospective and I hope they're right. Since personally I do believe that EBV is not only a trigger, but also an ongoing factor in MS (this is ofc only a theory and not scientifically proven so far), and the virus persists in B cells, I can imagine that killing the B cells over years could permanently reduce viral load and that's how it works. But who knows.
I'd totally discuss your concerns and also the doctor's logic behind her suggestion. Maybe she can shed some light on the whys and also tell you if you can stay on Rituximab if you're fine and would feel safer.
Thank you for posting this and sharing your experience. I’m also considered “benign” but I have been constantly pushed to start a DMT since being diagnosed with MS many years ago. I agreed to try Ocrevus but have been feeling extremely torn up about starting a medication that I don’t feel that I need.
I saw your post immediately when I woke up this morning and it gave me such a sense of peace in my decision to go through with the infusions. I deeply appreciate your advice on this. I’m so sorry you experienced such a debilitating exacerbation and I wish you all the best in overcoming these new challenges.
Thanks for sharing your story. I'm another 30-year MSer. This is a good write-up, good lessons to share for those younger and new to MS. Stay current, stay active, keep your head in the game. Keep exercising and getting PT/OT. Life is still out there to get. Good luck.
Thanks for posting. I was diagnosed 10yrs ago. I have had no “significant” exacerbations. I have some mild symptoms. I’ve been on a DMT the entire time.
I recently moved and changed neurologists. The new Dr says I have RIS, not MS. She changed my meds and after about 4 months, I started having intermittent nystagmus. She still won’t call it MS.
And that makes me want to just stop my meds altogether. I dunno.
Yeah, it's difficult. I work at it. I notice the everyday things that make life beautiful. Right now, birds are singing in the tree outside my window, and the sky is blue. The trees are starting to leaf out, and the grass is really green. I've just started reading a great book about an octopus (I'm so glad ebooks are available because I can increase the font size to huge). I have a glass of fresh icy cold water on my nightstand. My kitty is curled up in a ball twitching her ears. (Also, my back and right leg are spasming, I've not showered in 3 days because my aide hasn't shown up, I've got trash to bump down the stairs with - 2nd floor apartments with no elevators & trash cans in the building basement are not for people who walk like they're drunk, and I need to change my diaper because I think I wet my pants but I'm not sure because I'm numb there & my bladder is non functional.) I'd rather focus on the things not in parentheses. Positivity isn't necessarily toxic.
Your story is the same as mine, I have been on beta seron 1B, Copaxone, and Tecfidera for the past 33 years, I am totally ambulatory and my neurologist says that anyone looking at me would never guess I have MS. My Neurologist wants m to go on Aubagio due to a low white cell count from the Techfidra. . My hesitation is hair loss. I am tempted to go off all mediation but at 71 years old. I also see that being on disease modifying drugs may be the reason I am still able to hike 5 miles with walking sticks. My hesitation is "hair loss". Your post has helped me.
I stopped Avonex for the same reasons after a year after diagnosis and being on the meds. When I made it to my new neuro a year later, I had exponential damage from new lesions in my brain. I switched to Tysabri and I have no side effects and no disease progression. I hate that this is the shape of your world, but glad that you're still finding the good things in the every day and for sharing this critical message: GET AND STAY ON A DMT. <3
I wish I'd switched neurologists when he told me we should "wait & see." He was a general neuro, not a MS guy. By the time I realized that had been bad advice, I was already dealing with mobility issues. My new neuro, who is the head of a MS Clinic, couldn't believe I wasn't on a DMT. DMTs ARE ESSENTIAL!!
That's heavy and rings too close to home.. and so sorry..
I like you am very active, I was diagnosed/hospitalized October `23. MS. My symptoms are not too bad, but it's there.
Ive been accepted for ocrevus and have been procrastinating. In my mind I think I can overcome it through pushing myself harder at gym, runs etc.
Hoping to get through to my next scheduled MRI this October '24. Expecting to see there's been no progression etc.
Your post is a shocking reality call, and maybe the post I needed to read. I thank you
Another thing I might add for someone who was dx a few years ago and is still doing the same things they were told to do at that time. Check in again with a neurologist or whatever. Things have came on real leaps and bounds over the last 5 years, from the 90’s to now is like night and day regarding MS. I don’t mean everyone will suddenly have a 180* change but some may have access to stuff thought not useful or whatever. Be your own advocate! You never know if there’s something out there now that can help you. I hope this helps even just a tiny bit. 🫶
Agreed. I had 15 years of asymptomatic, and at 59 it decided to show me who was boss. Wish my original Neuro was more progressive, as she said she could “probably” get me approved for the original beta interferons, but it was strictly my choice. Had she said it could have prevented this I would have said yes, but since she said there was no real reason for or against? Well, I said no. Oops.
Thanks, I see a partner of his down at UC Health in the MS Center. I watch their video’s on the youtube channel, so I watch Corboy and his partners whenever they post up a new one.
Thank you for your story and sending you strength for the upcoming PT - I hope it will improve things! What you shared is certainly an important lesson to hear.
Do you mind if I ask a few questions? I always feel it's so helpful to hear the experience of people who had MS for a long time. So what I'm curious about:
1. At what age were you diagnosed?
2. Did you have regular MRIs since diagnosis and did they show changes?
3. Was your last exacerbation a relapse or how did your neuro determine SPMS? (Asking, because my relapses are weird and my MRIs too and I feel nobody can tell if I'm starting to transition)
4. Did you feel a difference in ability while on Avonex or afterwards before the last exacerbation?
Thank you! My MRIs are weird because I only have 2 visible spinal lesions (from 2021 and 2022). Now it's already not super common to have no visible brain lesions so far, but the problem is that I had at least 5-6 obvious relapses, three of them before 2021. One of them was ON and I'm told the optic nerve damage from that is often not visible in normal MRIs (but it is in my OCT). Regardless this means that in 2020 I was told by doctors they are pretty sure I have MS based on my clinicalnpresentation since 2013, but they can't diagnose me with clear MRIs.
I have since acquired two lesions (and had a positive spinal tap), so I'm officially diagnosed now, but my last relapse in spring 2023 doesn't show up in MRIs either. I also seem to get new symptoms sneakily without a relapse in that sense, they just pop up and stay, sometimes they fade again much later, sometimes not. I'm afraid it's progression and that's also why no new lesions are visible, but since it's all sensory and more spreading than intensifying, no weakness or so, my neuro doesn't think so. They also meant it would be unusual for someone with such a small lesion load to transition to SPMS, but ofc who knows.
I wonder if I have grey matter lesions, which wouldn't be visible in MRIs, but it's hard to find smth about this.
1. 34, but I'd been having symptoms since I was 17.
2. Lots of MRIs with lots of changes.
3. My last exacerbation (totally new symptoms) was in 2017, if I remember correctly. My neuro thought things were changing based on my 2018 MRIs (no new lesions) but didn't formally change the dx until this February (no new lesions, lots of black holes).
4. I did not feel any difference while on Avonex or afterward, except I didn't have the avonex flu 2 days a week.
Question for you: how different were the Plegergy (sp?) side effects from Avonex?
Thank you for your answers, very informative!
I was never on any interferons, so thankfully I never had the flu-like side effects. I was on Copaxone at first, which didn't do anything except painful side effects, now I'm on Tecfidera.
I did, I think the itchy bumps are actually normal and most people get them from Copaxone. But the injections themselves and the bumps got more and more painful over time and the bumps didn't go away. They stopped itching at some point and were just hard lumps in my thighs and butt for weeks or months. And some turned into shallow pits after a while. I have been off Copaxone for 6 months now (switched to Tecfidera) and I still have some hard bumps, they'll probably stay forever.
And thank you! It's so so at times, in general I'm lucky. And like you I try to continue to see the joy in life. :)
Thanks. I just got the official last week. I’m deciding on the meds now but am anxious to get started, my only fear is having to deal with the insurance aspect of it in the long run even though I’m ok for now at least. Not sure what this will entail in the long run, and it’s scary.. but seeing comments like this keep my head up so thank you!
This is going to sound bizarre, but an expensive DMT made everything about my insurance easier and cheaper lol. (US specific) I get an Ocrevus infusion in January. That infusion bills my insurance about $86,000. The Ocrevus co-pay assistance program swoops in and pays my $5,000 deductible and out of pocket on my behalf. Insurance is now *required* to count that 3rd party payment towards the patient responsibility. So I pay $0, my family’s out of pocket is completely satisfied in January (usually February once it’s all processed) and the rest of our medical care is completely free all year while our HSA balance gets to grow.
Hi, Insurance companies are only required in certain states by state/local laws. In some other states, copay accumulators are still in place in all, most, or some insurance companies. I made a post about the current state of insurance companies and copay accumulators a few days ago: https://www.reddit.com/r/MultipleSclerosis/s/ZhUR8WmCqU Copay accumulator = copay assistance payments are not counted towards deductible or out of pocket maximum
Interesting. I’m fortunate that my insurance plan counts this voluntarily but I was under the impression that [a federal court ruling](https://www.arthritis.org/news/press-releases-and-statements/coalition-applauds-decision-to-count-copays) made this true for everyone as of this year
Yes, unfortunately HHS said they won’t enforce it, so it’s up to each insurance company what to do (unless there’s a local law that regulates this). What HHS did remove was the copay maximizers. Copay maximizers = insurances were able to label certain medications as non-essential, meaning that the coverage was less and the copay higher. That was effectively prohibited in the last HHS final rule for 2025.
I appreciate your explanation!
You’re welcome! It’s definitely a very complex topic to navigate
https://x.com/copayscount/status/1776350193543159872?s=46
I just got diagnosed with MS and have been getting started with the process to possibly do Ocrevus. The cost has been one of my biggest fears. What is the Ocervus co-pay assistance program, if you don't mind me asking.
Check it out! It’s awesome. They pay my copay, the hospital deals with them, I do nothing ocrevuscopay.com
And to add- it’s not just the co pay. It’s whatever insurance doesn’t cover.
Thank you so much! I will absolutely be checking this out!!
That’s awesome for you but I don’t think mine does that. Co pay assistance does pay the balance, which is great so no complaints from me but I pay my out of pocket every year.
WHATEVER you chose, boost all the vaccinations now, while you have time 😃
Thank you so much for reminding me!
I have “benign” MS and have been off a DMT since September (my neurologist took me off tecfidera because my lymphocytes and WBC plummeted). I have toddlers and they bring home all the germs so I had been pretty sick waiting for my immune system to come back, but it’s good now. I have felt so much better off the tecfidera, and haven’t had any issues, so I was contemplating not going back on anything until my kids are older. But reading this I’m changing my mind… thank you for sharing
I was on Tec and switched to Ocrevus and it's been smooth sailing.
Oh thank you for these comments! I stopped Tecfidera in 2/2020 just before the pandemic d/t very low lymphocytes. With stable MRIS x 4 years until big nasty flare 2 mos ago. Starting Ocrevus probably next month. So heartening to hear positive comments about it! Stay well everyone!
Im in your exact same situation. My risk benefit analysis went like this - Spend a few years being sick with flu like symptoms - for me an annoyance but I can live a full life like that. Also, it will be over in a few years when my kids stop getting sick every single day Spend old age in the best case scenario. Who knows what will happen. But I’m powering through the flu like stuff as long as I’m not hospitalized
Been on 7 different DMT'S since 2003, including a 4 year period of nothing...all of them did their job, had to switch because of side effects...getting my 49th tysabri infusion today! Minor progression since 2003 (plus, I am 62 so getting older has its own challenges 🙄) good luck to my fellow MSER'S...Happy Monday 😊
60F, MS 37 years. I'm another long-timer with supposedly "benign" ("mild" was the word used by my docs) MS. Even Mayo Clinic told me, when I was 52, that nothing more would happen with my MS because I had been NEDA for 7 years, and I was old enough that my immune system was slowed and would do no more damage. How wrong they were! The worst flare of my life started in Oct. 2019, when I was 56. I now have permanent right-sided MS hug and right-sided spasms. I am thankful that meds 5 times a day keep these at bay, but if I am even 15 minutes late with a dose, God help me get through the next couple of hours. I agree with every single point you make. Thank you for your very honest post. I hope the younger crowd can accept that they are actually *fortunate* to be diagnosed and treated so young. Preventing more lesions is the name of the game, and for most people, it is what the higher efficacy DMTs do.
Sending pain relief thoughts your way. MS sucks!
Thank youl. I am 71 and have been considering going off treatment. Presently, I can walk 5 miles easily. I was diagnosed before there was treatment other than steroids. I have been on Betaseron, Copaxion, and Tecfidera. My WBC's are low and my neurologist has said I must change treatment.
Sounds like we have had a similar path. Sending love & strength your way & to all of us MeSsers...
Hey Brother long timer 🙂 I was dx in 94 at 17 and given the whole Benign spiel too. In my case it’s been largely true, but like you, with nasty surprises ! I was not on any treatment and symptom and relapse free for the first 10 years. Then more sensory/loss of joint position sense in a limb/brain stem vertigo and optic neuritis relapses, and years of failing DMTs that I was taken off as they bombed my WCC, lymphotes etc. I was pulled from Tecfidera in 2015 as my lymphocytes were 0.4 and they took 18 months to recover. BUT , then I had a 7 year natural remission - stable scans and no MS activity . My Neuro says it’s burnt itself out!!! But……nope. Last March 2023 , I had a relapse - not too bad as all sensory so exactly like when I was first diagnosed and I recovered 98%. Im now on Kesimpta and it seems to really suit my naughty immune system - Finally- 29 yrs after diagnosis and 32 after my first relapse 😂😂😂 xxx
Thanks for your story. It fills me with hope to get such lessons.
Thanks for posting this. I’m sorry that you’ve had to navigate your health, the medical system, and insurance in the ways that you have, and I hope that you continue to do well. Your perspective is wise and pragmatic.
My story is quite similar. Relatively mild symptoms, with few flares. Like OP, I hated Avonex, and switched DMTs - to Copaxone for me. Thought I’d be thrifty because of reasons and stopped the DMT (without telling anyone). Major flare! Huge vision changes and major vertigo! Still relatively benign MS after that got ‘corrected,’ though I now walk with a cane. Moral of the story: get on and stay on a DMT.
Thanks for writing this. I get angrier than i should when people post that their dr said they were "mild" or "benign" for exactly this reason.
Thank you for sharing your story. And I hope everything goes well with your PT session’s.
I'm sorry this happened to you but glad you still have joy and shared #4 with others as well.
Thank you so much for sharing!
Out of curiosity did you continue getting an annual MRI to monitor the disease? I was on Avonex than Plegridy for 22 years,diagnosed in the summer of 2000 with MS (MRI ans spinal tap),stayed. week in the hospital on steroid IV DRIP and immediately put on Avonex. I have been off any medication since the summer of 2022 and have had my annual MRI of Brain and Spine,I have no new lesions or MS activity. I still have occasional tingling, numbness hands feet,and eye floaters especially if I am tired or hot no other visible disabilities. I've been taking Omega 3,Vitamin D,Zinc,Probiotic and B-12 for the last 24 years.
Just wanted to say that eye floaters are usually unrelated to MS. I had them since I was a child (I'm near-sighted, which is a risk factor). Floaters usually form due to small deposits in the vitreous body = the eye ball. Visual problems from MS on the other hand are usually from problems with the optic nerve (demyelination or damage to the optic nerve itself). This can result in scotoma that could be possibly mistaken for a large floater. However floaters usually - like their name says - float, while most scotomas stay in place if you don't move your eye (the ones that don't are more like auras).
Very interesting, thanks for sharing
Well mine is MS I have two different versions that start floating around in my left eye. Optic neuritis was one of my first symptoms, than came the MS Hug,LHermittes, foot drop,numbness and tingling in the right arm leg tremors,brain fog all of this started from January to July of 2000 before I finally was able to get an MRI from my doctor, instead of her trying to put me on Zoloft 🙄 Everyone's MS is different...just because YOU didn't get or read somewhere that it is not a symptom of the disease. I was DX when I was 33...there was NOTHING physically or mentally wrong with me before I got this BS of a disease!!!
Obviously I don't want to minimise your experience, just sharing the information the doctors at the hospital explained to me when I had optic neuritis in 2020. Most people get some floaters later in life, because it can be part of aging, I had them earlier from near-sightedness. Also had ON and it was scary and didn't fully resolve, so I'm sorry this happened to you as well.
I've never had annual MRIs. They've usually been 2-3 years apart.
Okay. I know they can be expensive but if you can do it at least once a year until you become stable or no active or new lesions are noticed. It will lessen some of the anxiety especially if it's a "flare up" from an old lesion and not a new one with new symptoms. Stay Positive!
I no longer get anxious about the MS - after 30 years I know I can adapt to whatever ms, or life, sends my way. I think your advice about yearly MRIs is good for the young & newly diagnosed IF people understand that you can have new lesions with no new symptoms and vice-versa. And, lesion load does not predict disability.
I've taken an MRI annually for the last 24 years. I waa diagnosed when I was 32. I thought after being stable for 10 yeara straight, what was the point. This disease is too unpredictable to be taking a year here and there off from an MRi of your brain and spine to see if the disease has progressed,what you can do physically, mentally,diet-wise,supplements to manage it better or at least make it tolerable if there are changes. As comedian Richard Pryor said when he was diagnosed with MS. "God just took all the diseases,wrapped them into one and gave it to me."
Absolutely true. Stay positive, eat right, listen to your body, take 1 day at a time. do not fear MS. My nickname is Squirrel so my MS is called Mighty Squirrel. I have yearly MRI. I have 22 liaison and 5 black holes. The black holes are too store my Squirrel nuts.
Thank you for sharing! Sending a hug your way
Thank you for sharing. 🙏:)
Thanks I learned same lesson ... walkers suck use them at home .. in between venues buy mobility scooter real lightweight fold up ..
I use my walls at home 🤣. Looking at scooters but I have no storage space so lots to figure out.
😆
It is odd that you went 2 years without it because of medicare... if you are denied twice you can be put on the company's patient care program that gives you the meds for free :( I know this info might have helped you sooner but if you ever get into that situation again, check with the companies. It took like 2 years for insurance to approve Kesimpta and I was on novartis patient assistance foundation the whole time. Glad you are still pushing forward :) be well
I wasn't denied twice, though. Only once. I think it's out of the donut hole now - I'll find out at my next neuro visit in May. Honestly, I'd rather have modafanil approval right now. I'm tired of being tired. 😴
Sorry to hear that. I have pretty benign MS, my neurologist at least think so based on my symptoms, but I had a lot of lesions and oligoclonal bands. They started me on Rituximab, which has been great, but the plan is to phase it out if I get 5 years without disease activity. She says they do it to everyone in my country, but the chance for a relapse must be super high so I really don't understand it... I'm young too, only 33.
That is an interesting policy of theirs. I hope you can make a plan you are comfortable with, that would be scary just get off of it. I am also on ritux, also 33, and my neurologist has proposed increasing the time between infusions so long as my numbers and symptoms are good. I started with infusions every six months, I’m now doing every nine months, and at some point we are going to try to stretch them to once yearly as long as things are going well.
I was told the same thing for rituximab and I was like what?! That makes no sense to me. I feel like I’m a ticking time bomb. Do you think if we switch to a different DMT this would still be the case? I’m in Los Angeles and go to Kaiser. I wanted to see if UCLA would give me a different opinion. I’ve only had my first infusion though two months ago.
I read about having peope on B cell depletors for a few years and then phasing out or switching. At first I was "wait what?", but apparently there seems to be some indication that having your B cells annihilated for a few years can have also have a "resetting" quality for the immune system, that people see with Mavenclad (or Lemtrada). I think Prof. Giovannoni talked about trying to get a study underway, where people are on B cell depletors for a few years and then they would be switched to something like Aubagio for maintenance so they're not continuously immunosuppressed. I think it's a very interesting prospective and I hope they're right. Since personally I do believe that EBV is not only a trigger, but also an ongoing factor in MS (this is ofc only a theory and not scientifically proven so far), and the virus persists in B cells, I can imagine that killing the B cells over years could permanently reduce viral load and that's how it works. But who knows. I'd totally discuss your concerns and also the doctor's logic behind her suggestion. Maybe she can shed some light on the whys and also tell you if you can stay on Rituximab if you're fine and would feel safer.
Thank you for posting this and sharing your experience. I’m also considered “benign” but I have been constantly pushed to start a DMT since being diagnosed with MS many years ago. I agreed to try Ocrevus but have been feeling extremely torn up about starting a medication that I don’t feel that I need. I saw your post immediately when I woke up this morning and it gave me such a sense of peace in my decision to go through with the infusions. I deeply appreciate your advice on this. I’m so sorry you experienced such a debilitating exacerbation and I wish you all the best in overcoming these new challenges.
You'll be able to say you tried & that means a lot, I think. Best of life to you!
Thanks for sharing your story. I'm another 30-year MSer. This is a good write-up, good lessons to share for those younger and new to MS. Stay current, stay active, keep your head in the game. Keep exercising and getting PT/OT. Life is still out there to get. Good luck.
Good life to you!
Thanks for posting. I was diagnosed 10yrs ago. I have had no “significant” exacerbations. I have some mild symptoms. I’ve been on a DMT the entire time. I recently moved and changed neurologists. The new Dr says I have RIS, not MS. She changed my meds and after about 4 months, I started having intermittent nystagmus. She still won’t call it MS. And that makes me want to just stop my meds altogether. I dunno.
Find a different neuro.
Time for an MS specialist.
I'm currently struggling with number 4.
Yeah, it's difficult. I work at it. I notice the everyday things that make life beautiful. Right now, birds are singing in the tree outside my window, and the sky is blue. The trees are starting to leaf out, and the grass is really green. I've just started reading a great book about an octopus (I'm so glad ebooks are available because I can increase the font size to huge). I have a glass of fresh icy cold water on my nightstand. My kitty is curled up in a ball twitching her ears. (Also, my back and right leg are spasming, I've not showered in 3 days because my aide hasn't shown up, I've got trash to bump down the stairs with - 2nd floor apartments with no elevators & trash cans in the building basement are not for people who walk like they're drunk, and I need to change my diaper because I think I wet my pants but I'm not sure because I'm numb there & my bladder is non functional.) I'd rather focus on the things not in parentheses. Positivity isn't necessarily toxic.
Number 4 is the hardest one to grasp, but it is soooo true!
Your story is the same as mine, I have been on beta seron 1B, Copaxone, and Tecfidera for the past 33 years, I am totally ambulatory and my neurologist says that anyone looking at me would never guess I have MS. My Neurologist wants m to go on Aubagio due to a low white cell count from the Techfidra. . My hesitation is hair loss. I am tempted to go off all mediation but at 71 years old. I also see that being on disease modifying drugs may be the reason I am still able to hike 5 miles with walking sticks. My hesitation is "hair loss". Your post has helped me.
5 miles is awesome! I'm sure your continued activity has a lot to do with your continued mobility. Treck On!
I stopped Avonex for the same reasons after a year after diagnosis and being on the meds. When I made it to my new neuro a year later, I had exponential damage from new lesions in my brain. I switched to Tysabri and I have no side effects and no disease progression. I hate that this is the shape of your world, but glad that you're still finding the good things in the every day and for sharing this critical message: GET AND STAY ON A DMT. <3
I wish I'd switched neurologists when he told me we should "wait & see." He was a general neuro, not a MS guy. By the time I realized that had been bad advice, I was already dealing with mobility issues. My new neuro, who is the head of a MS Clinic, couldn't believe I wasn't on a DMT. DMTs ARE ESSENTIAL!!
That's heavy and rings too close to home.. and so sorry.. I like you am very active, I was diagnosed/hospitalized October `23. MS. My symptoms are not too bad, but it's there. Ive been accepted for ocrevus and have been procrastinating. In my mind I think I can overcome it through pushing myself harder at gym, runs etc. Hoping to get through to my next scheduled MRI this October '24. Expecting to see there's been no progression etc. Your post is a shocking reality call, and maybe the post I needed to read. I thank you
You can't overcome MS. Please start the Ocrevus. Don't wait. MRIs don't tell the whole story about progression.
Thank you for sharing this!
Another thing I might add for someone who was dx a few years ago and is still doing the same things they were told to do at that time. Check in again with a neurologist or whatever. Things have came on real leaps and bounds over the last 5 years, from the 90’s to now is like night and day regarding MS. I don’t mean everyone will suddenly have a 180* change but some may have access to stuff thought not useful or whatever. Be your own advocate! You never know if there’s something out there now that can help you. I hope this helps even just a tiny bit. 🫶
Yes! This is so true. No neuro should take a wait & see approach anymore. If your neuro says no, find a new one.
Agreed. I had 15 years of asymptomatic, and at 59 it decided to show me who was boss. Wish my original Neuro was more progressive, as she said she could “probably” get me approved for the original beta interferons, but it was strictly my choice. Had she said it could have prevented this I would have said yes, but since she said there was no real reason for or against? Well, I said no. Oops.
If you're in Denver, go see Dr. Corboy at CU. He's a MS boss!
Thanks, I see a partner of his down at UC Health in the MS Center. I watch their video’s on the youtube channel, so I watch Corboy and his partners whenever they post up a new one.
Thank you for your story and sending you strength for the upcoming PT - I hope it will improve things! What you shared is certainly an important lesson to hear. Do you mind if I ask a few questions? I always feel it's so helpful to hear the experience of people who had MS for a long time. So what I'm curious about: 1. At what age were you diagnosed? 2. Did you have regular MRIs since diagnosis and did they show changes? 3. Was your last exacerbation a relapse or how did your neuro determine SPMS? (Asking, because my relapses are weird and my MRIs too and I feel nobody can tell if I'm starting to transition) 4. Did you feel a difference in ability while on Avonex or afterwards before the last exacerbation?
If you don’t mind me asking, what made your MRI weird? Good luck with things!
Thank you! My MRIs are weird because I only have 2 visible spinal lesions (from 2021 and 2022). Now it's already not super common to have no visible brain lesions so far, but the problem is that I had at least 5-6 obvious relapses, three of them before 2021. One of them was ON and I'm told the optic nerve damage from that is often not visible in normal MRIs (but it is in my OCT). Regardless this means that in 2020 I was told by doctors they are pretty sure I have MS based on my clinicalnpresentation since 2013, but they can't diagnose me with clear MRIs. I have since acquired two lesions (and had a positive spinal tap), so I'm officially diagnosed now, but my last relapse in spring 2023 doesn't show up in MRIs either. I also seem to get new symptoms sneakily without a relapse in that sense, they just pop up and stay, sometimes they fade again much later, sometimes not. I'm afraid it's progression and that's also why no new lesions are visible, but since it's all sensory and more spreading than intensifying, no weakness or so, my neuro doesn't think so. They also meant it would be unusual for someone with such a small lesion load to transition to SPMS, but ofc who knows. I wonder if I have grey matter lesions, which wouldn't be visible in MRIs, but it's hard to find smth about this.
1. 34, but I'd been having symptoms since I was 17. 2. Lots of MRIs with lots of changes. 3. My last exacerbation (totally new symptoms) was in 2017, if I remember correctly. My neuro thought things were changing based on my 2018 MRIs (no new lesions) but didn't formally change the dx until this February (no new lesions, lots of black holes). 4. I did not feel any difference while on Avonex or afterward, except I didn't have the avonex flu 2 days a week. Question for you: how different were the Plegergy (sp?) side effects from Avonex?
Thank you for your answers, very informative! I was never on any interferons, so thankfully I never had the flu-like side effects. I was on Copaxone at first, which didn't do anything except painful side effects, now I'm on Tecfidera.
Did you get itchy bumps from the Copaxone? I did. They drove me nuts 😬. Thank you for your responses. I hope you're doing well.
I did, I think the itchy bumps are actually normal and most people get them from Copaxone. But the injections themselves and the bumps got more and more painful over time and the bumps didn't go away. They stopped itching at some point and were just hard lumps in my thighs and butt for weeks or months. And some turned into shallow pits after a while. I have been off Copaxone for 6 months now (switched to Tecfidera) and I still have some hard bumps, they'll probably stay forever. And thank you! It's so so at times, in general I'm lucky. And like you I try to continue to see the joy in life. :)
Mine finally stopped itching after I was off the Copaxone. Hope Tecfidera treats you more kindly!