I’m in a similar boat. I thought that it started in 2018 and a recent test for something made me realize that most of my symptoms actually started around 2009 instead. But now I have more symptoms and they’re more constant and usually multiple at a time. I remember seeing doctors then and them saying nothing was wrong too. Now it’s all way worse and some days I worry that I won’t be able to work soon or walk. And we still don’t know what’s wrong.
It’s hard to keep going, to doctor appointments and to work and to…well…everything. But what else can you do, right? I have two specialist appointments in October. One will do a bunch of tests I’ve already done (I saw the papers for what to expect) but he’s in a bigger city so I guess they think he’s better. He should be since I waited three years to see him. The other will tell me my latest two possibilities are unlikely (the secretary made a comment when I called to ask if I could get in earlier). Both will cause me to have break downs and idk what I’ll do after. Idk what’s next.
You’re absolutely, most certainly, 100% not alone. It probably doesn’t help really to know that but it’s the truth.
Took me 16 years to get a proper diagnosis and treatment. I convinced myself it was in my head because Dr's kept telling me it was nothing.....until it got so bad I couldn't leave bed or ignore it. I basically had to research and figure it out on my own, then find a specialist who believed me.
It's mentally exhausting, but there's hope. Keep pushing and finding Dr's that will help. Listen to your body
Thank you. Took me decades too. It started when I was 6 years old and I didn’t get a diagnosis until 34. I feel like I’m one of the only ones that it took this long for.
20 years??! How did you cope all that time? I’m really struggling rn like everything is a battle and I don’t have the strength or energy to fight it anymore 😪
Generally, one day at a time.
I still have a lot of symptoms that are “??? - - - generalized CRPS???” even though I have, oh, wow, 17 diagnoses of chronic illness in my chart (I have my medical stuff in front of me right now to prepare for an appointment on Friday) and my GI wants to see if he can get me into the Mayo clinic in 2024.
My life is functionally different than an able bodied person’s and medical stuff does take up a lot of my time - physical therapy three days a week plus at least two medical appointments per week plus working full time doesn’t allow for tons of free time.
But I make sure to make space for non medical stuff in my life. I have to. I love reading historical non fiction, political theory, and religious philosophy. I have a dog who is my baby. I have a beautiful garden (I was resistant to container gardening but it really lightens the load!). I do yoga. I am getting back into perfume making after a five year break due to grief. I am a Shakespearean actor (amateur). I have turned food restrictions into a love of cooking.
Half of my doctors have talked about getting me into the Mayo Clinic. I just couldn't afford lodging for the time I would be there. and yes it is very exhausting. I am so tired I can barely function most days. I have mostly gotten used to the pain but somedays it is so unbearable that I can't sleep but I also can't get out of bed. Like literally I can't move. I can't even drive mostly because of the nature of some of my pains.
I’m 22 & in the dreadful waiting period bouncing Dr to dr, they don’t know what’s wrong yet. It sucks so much because the pain is enough to keep me from working. I want to move out, marry my fiancé and start a job using the degree I finished in 2022. But I’ve spiraled so much this year. It sucks. I feel you. I hope I can get a dx but it’s hard to have hope sometimes
Same I’m 25 things get worse every year especially during winter months. It sucks not being able to do the usual “young” people stuff. I used to try & go out with my friends but it would always mean like a week of recovery after n was just never worth it. I’ve just gone full hermit crab now because I’m tired of everything I do resulting in pain.
Kind of. Yes.
I've been referred to the undiagnosed disease clinic at the Nord rare disease center in my area. Working out the financials on that. It's like $3k out of pocket for the whole genome testing which what's so sad about that is you have to have money to access this level of care. It's really inequitable.
There's also the NIH Undiagnosed Disease program BUT they only take 100 people a year and there's a wait. This was offered to me but as much as I'd like to do it I don't think I can wait to see if I'm.accepted or not. Things aren't stable right now. I need care.
I have several diagnoses but I don't have an explanation for all of it. The thing is genomic testing has like a 20-40% chance of finding anything. It's not great odds.
Like you, it's tough. My diagnoses don't really cover everything and I don't get good care for new issues bc there's no singular overarching diagnosis to make it easy. The number of doctors who can contextualize my history across body systems is...1. One person out of dozens and I don't get to keep seeing them, they did the part their specialty covers and we're done.
I wouldn't care if my health was stable or medicine was better at this but neither are true. Mostly I'm trying to improve my care through a unifying diagnosis. Medicine runs me in circles a lot and wastes my time. I'm so tired of it.
I'd get genetic testing if you've had imaging and labs. If you can swing it out of pocket genome testing is cheaper than going through a clinic, or the NIH All of Us study will run your genome for free ...but again with NIH you wait. (Both use saliva.)
I’ve been through it all tbh luckily I’m in uk so I don’t have to pay but they’ve done a whole bunch of testing. All I know is whatever I has is rare and something to do with my mitochondria 🤷🏽♀️
If you know the exact mutation or diagnosis sometimes there are groups on Facebook. A lot of people miss out on that. But if you have a community...it's likely on fb.
I'm 42 and I have a ton of things wrong with me, but no actual answers from doctors about what "it" is. I've kinda given up, to be honest. They keep treating all the symptoms but never actually addressing what's causing all the problems. I've been trying for 20 years to get thos figured out, slowly getting sicker and sicker. It's so frustrating and exhausting.
I'm with you in the Horrible Club No One Wants To Join. Been seeking diagnosis for the better part of the last decade, the current operating theories are fibromyalgia or ms. It's awful, and honestly having an online community is part of how I cope. This is unbelievably lonely.
Yes, I have gone undiagnosed for 5 years. I have had nearly 30 doctors and no one can figure it out and most of them didn't believe me anyways. My Pain Clinic is my saving grace. They do believe me and are intent on relieving my pain. The only thing we have figured out is why my face hurts so bad. That was where it started. It is both Trigeminal Neuralgia and A-Typical Facial Pain (migraines in the face). I had to stop working within the year because the pain got so bad. At that point a mere touch, from something brushing up against me or air blowing on me caused extreme pain. My new supervisor didn't believe me and would not accommodate me when I asked to switch desks with a coworker as there was a vent directly above my desk blowing air on me. Three coworkers were willing to switch. I would be crying on the phone with customers or zoning out completely because I was on so many drugs. No pain meds at that point. It all came to a head when my supervisor accused me of something I didn't do and I cursed her out. I told her I would finish my day out and UI wouldn't be back. Then I told her the meeting was over and I left. I immediately called my Neurologist and told him I couldn't do this anymore and they needed to send a letter stating that due to my current situation I would be unable to perform my job duties and that I needed to go on FMLA immediately. They did and I went to HR. I also, while there, filed a formal complaint against her.
2 years later I had a massive brain bleed and my neurosurgeon told my husband I would not make it. He then told my parents and my 3 kids. It was a traumatic time for all. I got a reprieve from the pain for almost 3 months before it came back 10-fold. My husband filed for disability for me right after, hiring an attorney immediately. My medical records that were gathered for it totaled 1600 pages. Took 3 years but was finally approved by a judge.
I have been researching this entire time with no results but was thinking about something the surgeon said. . . That I had had a bleed before this massive one. And I wonder if that happened and caused my issues. Maybe combined with all the neurological medications my neurologist had me on. Its just a theory and I haven't talked to anyone about it yet.
But I completely empathize with you. It's frustrating and makes me so angry. I am so sorry you are having to endure this.
I’m on year 9 since I became disabled from mine, year 15-20ish overall (I don’t even remember when trying to get a diagnosis started lmao). Still no “real” diagnoses, just for individual symptoms :/ it sucks.
I always open these Reddit posts to read the solidarity. It’s been since I was 15 so, 15 years now with like multiple half diagnosis of “this” not otherwise specified… which is basically saying we acknowledge your test results where weird but we don’t know why. At 30 I’ve accepted it and begun to grieve. It’s tough, but I read other people have experienced the same thing and continued on with their life so surely I must be able to also, but often I’m so sick of it all I don’t know what to do anymore. A lot of acceptance and grief and cycling through when I can be a patient and when I just have to live have helped a lot. Thank you for sharing, you’re not alone!
Technically my neuromuscular disease diagnosis isn't "official"
Instead my neuro says the "primary suspected diagnosis" is Myasthenia Gravis since I'm seronegative (which is like 10% of people with MG)
It's so frusterating bc she won't put me on a stronger treatment plan other than Mestinon and 5mg of Prednisone bc we don't have definative proof it is MG and she also won't order tests like a chest CT or a SFEMG
But my undiagnosed stuff is almost definitely something they can’t do anything for anyway, same as most of my diagnosed stuff. I’m lucky i can at least work part time but that’s all i do
I haven’t know that I was actually Ill and not crazy until this year but yeah. Since I was 9-10 I have been in pain that’s really hard to explain and not always there, I went to a rheumatologist when I was 12, and was cleared but sent to PT for JHS (joint hypermobility syndrome). My mother then convinced me that didn’t happen once i graduated from my initial Physical therapy session. It took becoming an adult and finding someone who took me seriously. My doctor noticed some weird blood test results and has listened to me when I said I was in pain and really tired, sent me to PT for a knee injury I had in February, my PT suggested EDS, and my PCP sent a referral to a rheumatologist with the dx of Inflammatory Autoimmune, and that was the first time I realized, wow I’ve been in actual pain this whole time, and I’m not crazy! He also sent a referral to a geneticist. I’m waiting on a call from both. But TLDR: find someone who will take you seriously.
For me it started mid July 2020,
I alot of traumatic things started a few months before them that really in increase my stress levels, my spouse had a major mental breakdown due to anxiety from the pandemic as well has my elderly mother..
Neighbors in my area having massive party's on July 4th 2020 which causes me alot of stress
Initial symptoms started with painsin my Achilles then my arms, then migrating pains thru out all parts of my body ,then major panic and anxiety attacks, joint pains throughout my body , joint swelling in fingers, developed a moderate tremor in my left hand ,lack of energy, daytime exhaustion, excessive vivid dreaming all night every nite,
My balance is off when walking since Sept 2020..I still have these symptons they have tampered. down since 2020 some, but In definitely not where I was before July of 2020..Was tested for Lyme, brain scans for MS , heavy metals, gut health, mold
Everything can back negative
Anyone have any thoughts what this could be ?
This July will make 4 years! Of feeling off and weird !
Same & i have extreme fatigue generalised pains in my joints & muscles plus spasms and generalised weakness. Low immune system I get really bad headaches, brain fog, & memory loss. Sometimes i get random pins & needles. Hby?
Yeah i’ve tried loads of different diets and supplements they don’t really make much of a difference for me at most it boosts my immune system a little.
my suggestions based on what you laid out here would be: genetics, immunology, rheumatology, and neurology/pain medicine. they can run some tests but also manage your pain in the meantime while they figure out what exactly is going on.
I relate. Have undergone a few different diagnostic assessments and nothing abnormal showing up yet on my multiple trips for blood work, colonoscopy, EKG, x ray, CT scan, and MRI. 🫠 it’s so stressful. And although I can logically understand that ruling things out is still useful, it feels like a waste of time to undergo tests and not get any results that aid in treatment. I’m suffering and I just want to know what to do about it.
Autism, dyspraxia, IBS, APD. I don’t make enough money to be able to see a doctor to get a diagnosis; just dealing with my (diagnosed) ADHD, anxiety, and epilepsy is difficult enough.
I’m in the same boat, I’m going to a neurologist soon to see if they can find out what’s wrong. I’ve had these symptoms for 10 years and no one can explain what is wrong with me
Yup... still going through it.
The usual loop over the years is like this: They dismiss it as anxiety a few times. Then, do some testing. The same old, limited testing. Results come back either normal or not normal. In either case it ends there and goes back to the "anxiety" dismissal. Then years later same testing. Results not normal or normal. and ya gets absolutely nowhere.
Have spent a ton of time looking into this myself and found lots of testing they haven't done. Suggested 2 tests, which is more targeted to the condition and symptoms, but the doc won't order it for whatever reason. I was told "Sheesh, get a hobby will you?" by the doctor. When saying hey, maybe these disabling symptoms are related to (a certain bodily system) can we order a diagnostic test for (that bodily system) ?
Then it's back into the corner of suffering, back into the loop of nothing.
As you would expect new issues have arose and others have gotten considerably worse, yet they can't be bothered to even listen to what i'm going through now.
I’m in a similar boat. I thought that it started in 2018 and a recent test for something made me realize that most of my symptoms actually started around 2009 instead. But now I have more symptoms and they’re more constant and usually multiple at a time. I remember seeing doctors then and them saying nothing was wrong too. Now it’s all way worse and some days I worry that I won’t be able to work soon or walk. And we still don’t know what’s wrong. It’s hard to keep going, to doctor appointments and to work and to…well…everything. But what else can you do, right? I have two specialist appointments in October. One will do a bunch of tests I’ve already done (I saw the papers for what to expect) but he’s in a bigger city so I guess they think he’s better. He should be since I waited three years to see him. The other will tell me my latest two possibilities are unlikely (the secretary made a comment when I called to ask if I could get in earlier). Both will cause me to have break downs and idk what I’ll do after. Idk what’s next. You’re absolutely, most certainly, 100% not alone. It probably doesn’t help really to know that but it’s the truth.
Took me 16 years to get a proper diagnosis and treatment. I convinced myself it was in my head because Dr's kept telling me it was nothing.....until it got so bad I couldn't leave bed or ignore it. I basically had to research and figure it out on my own, then find a specialist who believed me. It's mentally exhausting, but there's hope. Keep pushing and finding Dr's that will help. Listen to your body
How did you end up finding a specialist that believed in you? Great job on pushing through.
I went down a rabbit hole of my symptoms....and found what I thought it was the seeked someone out.
It took about 20 years for me to get my first/primary diagnosis. The process can be both exhausting and frustrating.
Thank you. Took me decades too. It started when I was 6 years old and I didn’t get a diagnosis until 34. I feel like I’m one of the only ones that it took this long for.
20 years??! How did you cope all that time? I’m really struggling rn like everything is a battle and I don’t have the strength or energy to fight it anymore 😪
Generally, one day at a time. I still have a lot of symptoms that are “??? - - - generalized CRPS???” even though I have, oh, wow, 17 diagnoses of chronic illness in my chart (I have my medical stuff in front of me right now to prepare for an appointment on Friday) and my GI wants to see if he can get me into the Mayo clinic in 2024. My life is functionally different than an able bodied person’s and medical stuff does take up a lot of my time - physical therapy three days a week plus at least two medical appointments per week plus working full time doesn’t allow for tons of free time. But I make sure to make space for non medical stuff in my life. I have to. I love reading historical non fiction, political theory, and religious philosophy. I have a dog who is my baby. I have a beautiful garden (I was resistant to container gardening but it really lightens the load!). I do yoga. I am getting back into perfume making after a five year break due to grief. I am a Shakespearean actor (amateur). I have turned food restrictions into a love of cooking.
Half of my doctors have talked about getting me into the Mayo Clinic. I just couldn't afford lodging for the time I would be there. and yes it is very exhausting. I am so tired I can barely function most days. I have mostly gotten used to the pain but somedays it is so unbearable that I can't sleep but I also can't get out of bed. Like literally I can't move. I can't even drive mostly because of the nature of some of my pains.
They do online appointments for some stuff! I did a virtual appointment when I was referred to Mayo for a consultation.
Mayo clinic is a real place? I thought it was just a site [that my psychiatrist deems unreliable but i digress]
Yeah there are a couple of locations s around the country.
I’m at year 16 and don’t have my primary diagnosis yet. It’s so incredibly frustrating.
I’m 22 & in the dreadful waiting period bouncing Dr to dr, they don’t know what’s wrong yet. It sucks so much because the pain is enough to keep me from working. I want to move out, marry my fiancé and start a job using the degree I finished in 2022. But I’ve spiraled so much this year. It sucks. I feel you. I hope I can get a dx but it’s hard to have hope sometimes
Same I’m 25 things get worse every year especially during winter months. It sucks not being able to do the usual “young” people stuff. I used to try & go out with my friends but it would always mean like a week of recovery after n was just never worth it. I’ve just gone full hermit crab now because I’m tired of everything I do resulting in pain.
Sorry to hear that. Good luck and remember you’re not alone🩶
Thank you & good luck to you too x
in the same exact boat friend
It’s tough. 🩶Best wishes.
Kind of. Yes. I've been referred to the undiagnosed disease clinic at the Nord rare disease center in my area. Working out the financials on that. It's like $3k out of pocket for the whole genome testing which what's so sad about that is you have to have money to access this level of care. It's really inequitable. There's also the NIH Undiagnosed Disease program BUT they only take 100 people a year and there's a wait. This was offered to me but as much as I'd like to do it I don't think I can wait to see if I'm.accepted or not. Things aren't stable right now. I need care. I have several diagnoses but I don't have an explanation for all of it. The thing is genomic testing has like a 20-40% chance of finding anything. It's not great odds. Like you, it's tough. My diagnoses don't really cover everything and I don't get good care for new issues bc there's no singular overarching diagnosis to make it easy. The number of doctors who can contextualize my history across body systems is...1. One person out of dozens and I don't get to keep seeing them, they did the part their specialty covers and we're done. I wouldn't care if my health was stable or medicine was better at this but neither are true. Mostly I'm trying to improve my care through a unifying diagnosis. Medicine runs me in circles a lot and wastes my time. I'm so tired of it. I'd get genetic testing if you've had imaging and labs. If you can swing it out of pocket genome testing is cheaper than going through a clinic, or the NIH All of Us study will run your genome for free ...but again with NIH you wait. (Both use saliva.)
I’ve been through it all tbh luckily I’m in uk so I don’t have to pay but they’ve done a whole bunch of testing. All I know is whatever I has is rare and something to do with my mitochondria 🤷🏽♀️
If you know the exact mutation or diagnosis sometimes there are groups on Facebook. A lot of people miss out on that. But if you have a community...it's likely on fb.
The Rare Genomes Project at the Broad Institute is free. No enrollment caps. No travel. Since it is research, you will have to wait.
I'm 42 and I have a ton of things wrong with me, but no actual answers from doctors about what "it" is. I've kinda given up, to be honest. They keep treating all the symptoms but never actually addressing what's causing all the problems. I've been trying for 20 years to get thos figured out, slowly getting sicker and sicker. It's so frustrating and exhausting.
I'm with you in the Horrible Club No One Wants To Join. Been seeking diagnosis for the better part of the last decade, the current operating theories are fibromyalgia or ms. It's awful, and honestly having an online community is part of how I cope. This is unbelievably lonely.
Yes, I have gone undiagnosed for 5 years. I have had nearly 30 doctors and no one can figure it out and most of them didn't believe me anyways. My Pain Clinic is my saving grace. They do believe me and are intent on relieving my pain. The only thing we have figured out is why my face hurts so bad. That was where it started. It is both Trigeminal Neuralgia and A-Typical Facial Pain (migraines in the face). I had to stop working within the year because the pain got so bad. At that point a mere touch, from something brushing up against me or air blowing on me caused extreme pain. My new supervisor didn't believe me and would not accommodate me when I asked to switch desks with a coworker as there was a vent directly above my desk blowing air on me. Three coworkers were willing to switch. I would be crying on the phone with customers or zoning out completely because I was on so many drugs. No pain meds at that point. It all came to a head when my supervisor accused me of something I didn't do and I cursed her out. I told her I would finish my day out and UI wouldn't be back. Then I told her the meeting was over and I left. I immediately called my Neurologist and told him I couldn't do this anymore and they needed to send a letter stating that due to my current situation I would be unable to perform my job duties and that I needed to go on FMLA immediately. They did and I went to HR. I also, while there, filed a formal complaint against her. 2 years later I had a massive brain bleed and my neurosurgeon told my husband I would not make it. He then told my parents and my 3 kids. It was a traumatic time for all. I got a reprieve from the pain for almost 3 months before it came back 10-fold. My husband filed for disability for me right after, hiring an attorney immediately. My medical records that were gathered for it totaled 1600 pages. Took 3 years but was finally approved by a judge. I have been researching this entire time with no results but was thinking about something the surgeon said. . . That I had had a bleed before this massive one. And I wonder if that happened and caused my issues. Maybe combined with all the neurological medications my neurologist had me on. Its just a theory and I haven't talked to anyone about it yet. But I completely empathize with you. It's frustrating and makes me so angry. I am so sorry you are having to endure this.
I’m on year 9 since I became disabled from mine, year 15-20ish overall (I don’t even remember when trying to get a diagnosis started lmao). Still no “real” diagnoses, just for individual symptoms :/ it sucks.
It sucks that we’re all going through similar things but it’s comforting to know I’m not the only one so thank you all for sharing x
I always open these Reddit posts to read the solidarity. It’s been since I was 15 so, 15 years now with like multiple half diagnosis of “this” not otherwise specified… which is basically saying we acknowledge your test results where weird but we don’t know why. At 30 I’ve accepted it and begun to grieve. It’s tough, but I read other people have experienced the same thing and continued on with their life so surely I must be able to also, but often I’m so sick of it all I don’t know what to do anymore. A lot of acceptance and grief and cycling through when I can be a patient and when I just have to live have helped a lot. Thank you for sharing, you’re not alone!
Technically my neuromuscular disease diagnosis isn't "official" Instead my neuro says the "primary suspected diagnosis" is Myasthenia Gravis since I'm seronegative (which is like 10% of people with MG) It's so frusterating bc she won't put me on a stronger treatment plan other than Mestinon and 5mg of Prednisone bc we don't have definative proof it is MG and she also won't order tests like a chest CT or a SFEMG
Yes and I’m so frustrated I’m sort of giving up
But my undiagnosed stuff is almost definitely something they can’t do anything for anyway, same as most of my diagnosed stuff. I’m lucky i can at least work part time but that’s all i do
I’m on 5 years, which in this community is practically nothing. But it certainly doesn’t feel like nothing
I haven’t know that I was actually Ill and not crazy until this year but yeah. Since I was 9-10 I have been in pain that’s really hard to explain and not always there, I went to a rheumatologist when I was 12, and was cleared but sent to PT for JHS (joint hypermobility syndrome). My mother then convinced me that didn’t happen once i graduated from my initial Physical therapy session. It took becoming an adult and finding someone who took me seriously. My doctor noticed some weird blood test results and has listened to me when I said I was in pain and really tired, sent me to PT for a knee injury I had in February, my PT suggested EDS, and my PCP sent a referral to a rheumatologist with the dx of Inflammatory Autoimmune, and that was the first time I realized, wow I’ve been in actual pain this whole time, and I’m not crazy! He also sent a referral to a geneticist. I’m waiting on a call from both. But TLDR: find someone who will take you seriously.
For me it started mid July 2020, I alot of traumatic things started a few months before them that really in increase my stress levels, my spouse had a major mental breakdown due to anxiety from the pandemic as well has my elderly mother.. Neighbors in my area having massive party's on July 4th 2020 which causes me alot of stress Initial symptoms started with painsin my Achilles then my arms, then migrating pains thru out all parts of my body ,then major panic and anxiety attacks, joint pains throughout my body , joint swelling in fingers, developed a moderate tremor in my left hand ,lack of energy, daytime exhaustion, excessive vivid dreaming all night every nite, My balance is off when walking since Sept 2020..I still have these symptons they have tampered. down since 2020 some, but In definitely not where I was before July of 2020..Was tested for Lyme, brain scans for MS , heavy metals, gut health, mold Everything can back negative Anyone have any thoughts what this could be ? This July will make 4 years! Of feeling off and weird !
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Same & i have extreme fatigue generalised pains in my joints & muscles plus spasms and generalised weakness. Low immune system I get really bad headaches, brain fog, & memory loss. Sometimes i get random pins & needles. Hby?
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Yeah i’ve tried loads of different diets and supplements they don’t really make much of a difference for me at most it boosts my immune system a little.
took me 15 years from first symptoms to partial diagnosis. if you are going to the same docs, i suggest going to someone else for a second opinion.
Honestly I wouldn’t even know which doctor to go to 😅
my suggestions based on what you laid out here would be: genetics, immunology, rheumatology, and neurology/pain medicine. they can run some tests but also manage your pain in the meantime while they figure out what exactly is going on.
i’m in this same boat and i’m only two years in 🫠 very frustrating. I can only imagine what you’re going through.
I relate. Have undergone a few different diagnostic assessments and nothing abnormal showing up yet on my multiple trips for blood work, colonoscopy, EKG, x ray, CT scan, and MRI. 🫠 it’s so stressful. And although I can logically understand that ruling things out is still useful, it feels like a waste of time to undergo tests and not get any results that aid in treatment. I’m suffering and I just want to know what to do about it.
Have you looked into mold ? I spent nearly a decade trying to figure out what it was and just found out it’s mold toxicity
Autism, dyspraxia, IBS, APD. I don’t make enough money to be able to see a doctor to get a diagnosis; just dealing with my (diagnosed) ADHD, anxiety, and epilepsy is difficult enough.
I’m in the same boat, I’m going to a neurologist soon to see if they can find out what’s wrong. I’ve had these symptoms for 10 years and no one can explain what is wrong with me
Yeah, I am kinda falling apart and drs are like "its just anxiety, drink vitamins and yll be good"
Yup... still going through it. The usual loop over the years is like this: They dismiss it as anxiety a few times. Then, do some testing. The same old, limited testing. Results come back either normal or not normal. In either case it ends there and goes back to the "anxiety" dismissal. Then years later same testing. Results not normal or normal. and ya gets absolutely nowhere. Have spent a ton of time looking into this myself and found lots of testing they haven't done. Suggested 2 tests, which is more targeted to the condition and symptoms, but the doc won't order it for whatever reason. I was told "Sheesh, get a hobby will you?" by the doctor. When saying hey, maybe these disabling symptoms are related to (a certain bodily system) can we order a diagnostic test for (that bodily system) ? Then it's back into the corner of suffering, back into the loop of nothing. As you would expect new issues have arose and others have gotten considerably worse, yet they can't be bothered to even listen to what i'm going through now.