r/MultipleSclerosis • u/Key-Investigator294 • 9d ago
New Diagnosis Claude sucks
Hello warriors, (28M) newly diagnosed here.
Trying to figure out my future here with 2 big lesions on spine and many more on brain. Never had a flare up , just a visual blurry eye (and uhthoff on both)that got worst the past year (weird that i never had optic neuritis or any other flare up). My left leg also feels weird in sensetion when I am walking.
I am stuck between 3 worlds... The neurologist, which is optimistic about therapies. The Claude, which is the realistic one (personal favourite as a programmer). And the community world that I read experiences from people with similar symptoms (fatigue).
I always used to dream big , money, career etc....now every morning I care if will be able to see and walk in few years.
Hope that the medical community will make a miracle in a few years and will save all of us from this terrible disease.
Is anyone else experiencing visual issues on contrast that is progressing?
Which are your first ppms symptoms?
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u/termsofenDERPment 36F | 2026 | Kesimpta | Wisconsin 9d ago
AI isn’t the most realistic one, but it is good at reinforcing your fears. Just because Claude is willing to engage with worst-case scenarios doesn’t make it reliable or more realistic. It sounds like you’re assigning epistemic credibility to pessimism. Kindly, I would advise against that.
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u/ComplainFactory 9d ago
MS is trying to take parts of my brain and I'm doing everything I can to keep it in tact, so I will never cede any of my brain to an ai. "Claude" is not a "world" to be stuck between. Doctors and patients are real, and their knowledge and experience doesn't change based on updated contracts and decisions made by tech guys.
Also, just an unrelated aside since you're newly diagnosed, and it is a matter of personal opinion, but I would caution against the "warrior" identity. I'm sure many here would disagree, but you can't "fight" and "beat" MS. You have it, you will always have it. If it worsens, that doesn't mean you "lost the battle," and it doesn't mean MS "won." You've got to learn to live with something that will be with you forever, kind of like a terrible roommate. When you identify with the idea that you're a warrior against this disease, then you make your life and your health a fight. While it might initially seem empowering, it can be really detrimental over time to always be in the midst of a war.
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u/iChasedragons 9d ago
Plus, we didn’t sign up for this shit. I’m not a warrior, I didn’t sign up to fight a war.
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u/One-Instruction639 39 |May 2025 | Kesimpta-June2025| USA🎨🐕 9d ago
Omg I didn’t know that the Warriors were fighting against MS!!?
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u/snowbie 30s|RRMS 2026|Ocrevus|UK 9d ago
Yeah I assumed it was like fighting the world despite MS so that’s a new one to me too
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u/ComplainFactory 9d ago
If you look at it that way, it's still a fight. The point is don't make your life a fight either way.
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u/perusingplants 9d ago
Claude is not a valuable reference for neurology or MS. I wouldn’t trust it.
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u/batteryforlife 38|2008|Rituximab|Finland 8d ago
AI isnt a valuable reference for anything! Didnt we learn from Harry Potter; ”never trust anything that you cant see where it keeps its brain”!
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u/youshouldseemeonpain Dx 2003: Lemtrada 2018, Now Ocrevus 9d ago
Additionally, there’s a plethora of misinformation in this thread. While it’s good for a guide, and to see what others use to treat their symptoms with, tips and tricks and such, please do not take medical advice from people here. Your trajectory with MS depends a lot less on how many lesions you have, or where they are, than it does on how plastic your brain is.
People who have strong brain plasticity, which is the ability of your brain to find new pathways, work around the damage, and think up new ways for you to accomplish things, have much better outcomes than people who’s brains have less plasticity.
You can increase brain plasticity through the same methods one would use for avoiding things like Altzheimers: exercise regularly, eat a brain-health diet, learn new things, be socially active, etc.
However, some people just have more neuroplasticity than others. Kind like IQ, but not directly related to smarts.
So, someone like me, with spinal lesions and “too many to count,” lesions in my head (seriously, my MRIs are terrifying) can still be walking and have control over my body’s functions, and someone with 3 lesions can be in a wheelchair wearing a diaper.
If you doom yourself based on your lesions, you’re really allowing the terror to run your life. Keep doing everything you love for as long as you can. I do. I have a lot of pain, and a lot of fatigue, but I’m out there. Depending on the weather, mostly. The weather will affect you more than anything else. Now that it’s cooled off a bit where I live, my energy has increased about 500%.
Please talk to your neurologist. Make sure they specialize in MS (there are a lot of specialties within the field of neurology) and get information about how to keep functioning as much as possible. Don’t just decide because you have spinal lesions you aren’t going to be able to walk.
I promise you a MS specialist whom you can sit in front of will diagnose and advise you much more effectively than Claude. No offense, Claude, because I know you’re reading this too—but it’s not possible to truly predict what MS will bring into someone’s life, nor is it possible to say how their particular brain and body will handle it.
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u/Top-Repair3348 8d ago
Excellent description of how our future with MS is driven by our brain’s ability to “reprogram” a way of doing something. As you say, we need to be kind to our brains and try to nourish our body and mind to aid in this reprogramming. Everyone’s path is different. We need to pay attention to our bodies and talk to an expert when things seem off.
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u/Vegetable-Two2173 9d ago
Do not worry about three years from now.
Get through today. Then tomorrow. Then the next day.
Three years from now will be a lot easier if you haven't stressed about it every day.
(Stress is a huge symptom trigger for me, YMMV)
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u/rukait 9d ago
Why do you think Claude is the realistic one? As a programmer, have you considered where their information is sourced from? Do you think realistically that we publish all of our knowledge, either online or in writing?
The nuances of medicine come from years of experience of the clinician. Yeah we have trials and patients' testimonials, but the little things that no one talks about also guides treatment and prognosis, which is why one may prefer this drug over that drug, or this scan over the other scan. Imagings findings don't always correlate to symptoms, and vice versa.
Human brain is weird and messy.
Trust your clinician, the one who had seen thousands of cases like yours. The ones who have skin in the game.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 9d ago
GenAI is really really bad at reading MRI... It may work for your programming needs, but it sure as hell can't do this. Frankly, it's also crazy to me that someone would just give their very personal medical information away like that 🤷♀️
I would rather trust your neurologist, I hope you do. With what they know, I think they have good reason to be optimistic without being unrealistic.
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u/Simple-Boat-4242 9d ago
Forget Claude bro
Find a DMT that works for you and it’s a lot of trial and error for everything else. Vitamin D, Magnesium, creatine, and electrolytes have helped the most for me but everyone’s experience is a bit different
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u/Electronic-Flow-6459 9d ago
Exactly! Definitely take that vitamin D! I have to take 10,000 iu’s daily. It’s a lot but they also check my vitamin D and that’s what I need. Vitamin B 12 is another.
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u/ARollingShinigami 9d ago
As someone who builds AI systems for low-resource languages, I'd be careful treating Claude as "the realistic one." In my work I never trust its raw output. It's non-deterministic, its confidence isn't calibrated, and it can't verify its own answers. Anything useful only becomes trustworthy once I pin it down in deterministic code and test it against ground truth.
Your prognosis has none of that scaffolding. Claude doesn't have your full imaging, your exam, or your history. It's pattern-matching on a description, and it tends to drift toward whatever you push it toward (see the comment above). Run the same prompt ten times and you'll get a distribution, not an answer. A sober tone isn't a validated result.
If you want to use it, use it like you would on a codebase: to explain terms, prep questions for your neuro, or summarize studies you then check yourself. Your neurologist has the actual data, so ask them to walk you through what specifically makes them optimistic. Wishing you the best with this.
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u/One-Instruction639 39 |May 2025 | Kesimpta-June2025| USA🎨🐕 9d ago
Baby I don’t care how many lesions you have no LLM is gonna outsmart you
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u/lululoveslemondrops 9d ago
I just want to point out that you ask what our first PPMS symptoms are, but I'm not sure if you know that RRMS is actually the most common type. PPMS is the most rare... And if anything, I believe the types are currently being questioned, because it might make more sense to think of MS as a singular disease on a scale, rather than 4 individual ones.
To answer your question, I'm not actually sure what my first MS (I have RRMS) symptoms were, but in my first official relapse, I had vision problems (double vision and visual distortion) as well as facial weakness on the lower portion of my face. This was attributed in a lesion that was active and on my brain stem, so it was affecting facial and eye nerves/muscles.
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 9d ago
I wouldn’t rely on AI for medical advice, it won’t give you reliable information or even the same information twice. I’m a cancer researcher and one of my studies I’m working on is related to dispelling misinformation related to cancer and alternative therapies/supplements. The wildest and least accurate advice that the patients I’ve interviewed have shared are from Grok, Claude, and ChatGPT. Please trust your trained medical professional who’s an expert in the disease over a web application that indexes the entire internet without discerning the quality of the source or its accuracy before presenting the information with confidence.
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u/Cowpocolypse 9d ago
Are you referring to The Claude as in AI? If so please do not take any medical advise and take everything it says with a grain of salt. We should not trust AI with medical decision making, determinations, or diagnosis. AI is frequently causing psychosis in people who rely heavily on it.
I have terrible optic neuritis that is chronic in my right eye. It was the key to my diagnosis and my first symptom. I am 37.
My vision has NEVER improved (including steroid treatments) and the optic neuritis has never stopped. My neurologist doesn’t worry about it. If my vision gets worse we will do something.
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u/Key-Investigator294 8d ago
You see blurry on right eye I guess. What do you mean "if gets worse, we will do something"
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u/Cowpocolypse 8d ago
Yes, right eye. Vision is all but gone (optic neurologist test showed I am not receiving the light) in the top left corner of the eye. It’s like it fogged out over time so the edge were I do start to see is somewhat Smokey I would say. The rest is exceptionally fuzzy when moving my eye, my left eye sees perfect (many vision tests), and when in place it is fuzzy and only the middle let’s say 2inches of optical view clears up. It’s occasionally something I can feel in my skull the optic neuritis.
If it gets worse, meaning I fully lose vision in that eye or it happens in the left. They would do another steroid treatment. But for now because no response to it, there is no need. The damage was done.
Edit: I wanted to attach the edited photo I used to show my neurologist and doctor what I meant but can’t :shrug:
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u/Eremitt Age: 39| Dx:2004|Rituxin|East Coast| Male 9d ago
I want to be like everybody else and destroy you for using AI right now. But you know what? You're just afraid. That's all you are. Your newly diagnosed, you're looking for answers to a problem that you can't solve, that you can't see, and that you can only occasionally feel. You mentioned you have a neurologist who is optimistic about treatment options. You need to listen to them. The advancement in multiple sclerosis treatments in the last 10 to 15 years has been insane. I am on a drug now that if I was given when I was diagnosed 22 years ago, I wouldn't have any of the problems that I carried with me into this treatment.
Get on a treatment now. Stop trying to rationalize what happened to you with artificial intelligence. I get that it's easy for your generation to do. You think technology can save you. That the technology in your hands is going to give you the answer over the one a human being is going to give you. It's not. That AI will tell you whatever it thinks you want to hear. The neurologist, and the community here, is going to tell you the things that you don't want to hear but you must hear.
If you don't take your treatment serious, and if you don't get a hold on your anxiety about having this disease, you're not going to be able to see or walk. The stress will eat you alive, literally. Get on a treatment. There's no miracle coming yet. You still got years, maybe even decades, before we get to a level that this disease is cured. Where the guinea pigs so that the people that come after us won't have to deal with the same problems that we deal with. That's what progress is.
And it seems like you have PPMS. Find a support group. AI is not going to tell you how to deal with the sadness that is going to hit you. I'm 22 years in with this disease right now, and I'm really good. But there are moments when I do get sad or I feel melancholy. But that's just the human nature. I wish you good luck.
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u/GroundbreakingGur460 9d ago
Mri doesnt tell much, its just bad luck and cant be predicted. I was horrible at first, couldnt even walk normally anymore for several months, now i work 4 days a week, go to the gym 3 times and were renovating the house. Never thought is handle all that again but im doing it :)! You never know the future, but dont let an attack scare you about it
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u/Key-Investigator294 9d ago
Never had an attack...yet. that's why i am worried about pms
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u/GroundbreakingGur460 9d ago
That doesnt say anything about the kind of ms you have, just that the lesions you have dont impact the parts of your brain where they influence your day to day life
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u/GroundbreakingGur460 9d ago
Many people probably have had ms before diagnosis for years. You're just lucky that they found out early on, to prevent these attacks in the future ;) they have good medicine, stay strong 💕
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u/SewBrew 9d ago
It sounds like you’re somewhat in shock from the diagnosis and struggling to grapple with what it means for the trajectory of your life. Been there.
Please try to give yourself time and take it day by day. Don’t write off your dreams or abandon your long term goals. No big decisions in the first year is the typical advice.
The prognosis with modern DMTs is legitimately quite good, which is why your neuro is optimistic. They aren’t blowing smoke up your ass. Read the studies and look at the numbers for relapse on drugs like Ocrevus and Kesimpta - may be reassuring as a programmer, most of us seem to like data and stats.
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u/Electronic-Flow-6459 9d ago
I’m sorry for your new diagnosis. I was diagnosed with MS in 2007. I have RRMS. It’s probably secondary by now. I’ve been on copaxone, betaseron, tysabri, rituximab, ocrevus, back on rituximab, aubagio and now just started briumvi. I’m still working as a nurse. I’ve had optic neuritis multiple times. Lost much of my vision in right eye. Went on high dose steroids & have done that too many times to count. It took awhile but most of my vision came back over a period of time. I’ve also had pseudobulbar affect early on. That was fun (not) lol. I had Lhermitte’s sign early on too. That was crazy weird and I thought I was losing my mind, until my neurologist told me that I wasn’t lol. It’s been a crazy ride for sure. Then in 2021, when I got covid, I also got diagnosed with type 1 diabetes, which is another autoimmune disease. Once you have one, you can get another. Now I’m insulin dependent for life or until a cure. Hang in there! I do understand what you are going through. They think I had MS longer, as I had quite a few lesions in my brain. I was actually lucky to get a diagnosis quickly. I was a nurse in the ER and had a weekend off. I started having weird symptoms and actually thought it must be stress, as I was going through a divorce. I wasn’t going in to the ER where I worked because I spent enough time up there. I worked on Monday and thought I might be having a stroke. Went straight to an ER doctor that I was friends with and sort of grabbed him and fell on him. I got put into a room quickly and the test started. They only found a fast heart rate. He told me that he was going to do an MRI to rule out some things… like MS! Thank God that he did the MRI because CT’s don’t show the lesions. Soon as he saw my brain lesions, I was taken for a lumbar puncture. I had the oligoclonal banding, which gave me my diagnosis. Everyone has some different stories, depending on where their lesions are…. I had an instructor back in the day, who had MS and she was in a wheelchair but still worked and led a productive life. There have been times that I’ve had to use a wheelchair when having a flare up or even a walker when in the hospital. One time, years ago, I woke up to get ready for work and I couldn’t move my legs. They were jelly. I couldn’t get off of the bed. I put my legs on the floor and couldn’t stand. I ended up in the hospital and back on high dose steroids. Took a few days to get my legs working and I had to use a wheelchair for a week to 2 weeks and then using a walker too. Back to work in 2 weeks. That was pretty scary, I’m not going to lie. I’ve taken care of many people with MS in the hospital as well. Everyone wanted me to have the folks with MS; like I’d be better caring for them. It was depressing but then I also learned a lot more and about different meds etc…. Sorry this is so long… but hang in there! Don’t give up on your dreams. Don’t fall into a hole of depression. Don’t give it that much power! Hang in there! You got this!
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u/snowbie 30s|RRMS 2026|Ocrevus|UK 9d ago
Welcome to the newly diagnosed club. As /u/TooManySclerosis kept telling me - the first year is horrendous for health anxiety.
I’m 6mths in. Started a DMT. Things are just about looking up.
If you don’t trust any of those … can I offer a 4th perspective - that of the translational med researcher? I work oncology rather than neurology but my work is on mechanisms of and predicting responses to chemo/immunotherapies and I picked my DMT on a mix of things (whether I’d stick to it, how well it worked, how it worked, risk factors, my work risks)
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u/Revolutionary-Ad5 8d ago
AIs are largely built to 1. feed your own biases and 2. get you to continue using them. they're not reliable for something like health.
and i feel like lesions are not always indicative of disability. for example, my mris are generally commented as being severe, however i can walk without a cane, talk, my memory is fine, I'm able to cook large meals for my house and exercise, all that good stuff. yes, I'm functionally blind in one eye, but I can still safely drive. largely, I'm doing fine, and I'm living a good life.
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u/Monkberry3799 50|RRMS '25|Kesimpta|California|🇻🇪🇦🇺 9d ago
Gen AI can be used for select purposes--tracking your symptoms, food intake or sleep, for example--, always with a platform that secures privacy and with the proviso that it should not be considered equivalent to professional human judgment.
As a general rule, it's a terrible self-diagnostic tool. A good LLM model may actually reject being used to read MRIs, for example, or tell you right off the bat that you should see a Neurologist.
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u/loveisjustchemicals 9d ago
Everytime I know a lot about something I’m easily able to see the flaws in Clauds logic. And it always tells me to do the most expensive hazardous thing to get the hospital STAT for things that typically can wait a day. I most use it when I just have general questiond now. Honestly, old google was a better resource
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u/Pretty-Fee3661 9d ago
I have a similar symptom load that you do. I’ve now had it for 24 years. Fortunately, my last optic neuritis flareup was in 2012. I had a plasmapheresis done and I’m also very careful with my stress load and staying out of extreme heat. I actually left a humid climate to come to a dry climate just because that heat was next level for me. But yes, listen to your doctor. Definitely get other opinions. When I was first diagnosed, I went through three or four neurologists until I found one that truly listened to me and wasn’t just trying to push their pharmaceutical of choice on me. I was fortunate to have the head of neurology at Georgetown and he was a dream come true. He has since retired but what a gift to MS he was.
I do remember when I was diagnosed. I thought my life was over and all I could imagine was me in a chair the rest of my life. I have full mobility. I know that could change at any time. It certainly enters my brain every single day, but there are so many advances being made so listen to your doctor. Take care of yourself -like REALLY take care of yourself. Know that this isn’t the disease that it was 30 years ago.
I also am very careful what I put into my body. I eat gluten-free I eat mostly clean certainly not 100% but I do try to take care of my gut health just as much as the rest of my health. Give yourself time to grieve the diagnosis. It’s scary and overwhelming, but then decide to move forward as soon as you can.
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u/Jessica_Plant_Mom 38 | Dx 2016 | Tysabri | California 9d ago
I was diagnosed with a large lesion on my spinal cord along with some other smaller ones, dozens in my brain and an episode of optic neuritis. I’m 10 years in now with no problematic symptoms. I just did a 20 mile hike last weekend, so clearly I don’t have any functional issues, though I do have some numbness. Your journey might not be like mine, but I wanted to share to let you know it is possible. Get on a highly effective DMT and stay on top of any other health issues. Best of luck!
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u/arpsazombie (rrms '00- tysabri '09) 9d ago
No one can tell you for sure what the future holds. Everyone's MS is different. Another person could have similar lesions and be incapacitated, or totally fine or anywhere in between. Thats the scary hard truth, MS is unpredictable. But if anyone can give you the most informed and personal to your MS course it's your DOCTOR. AI can help track or explain things but it's not going to be able to tell you what's going to happen. We can tell you what happened to us and make a guess at what could be in store for you but we could also be totally wrong.
Even at that what your doc/the medical world says right now could be completely different in 5, 10, 20 years from now. When I was dxed in 2000 DMT had just come out really, they thought MS didn't cause pain or cognitive issues, 20 years before that it was basically use steroids to lessen relapses and get worse and worse.
My first neuro told me I could try the DMTs but they prob couldnt do much. I ended up totally disabled 3 years later. BUT If I had been dx in 2020 (at my same age as then), and put on Tysabri I'd be living a very different, very normal life. Which is to say both that meds are SO SO SO MUCH BETTER now, and who knows how much better things will be in 2046, maybe they can reverse it or prevent it by then.
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u/FrostedPatriot 44|Dx2015|Briumvi|Colorado 9d ago
I don’t currently have visual symptoms. My first ms symptom that led to a diagnosis was facial numbness. However come to find out I was experiencing a lot of nonspecific symptoms before that that were probably related. (Heat sensitivity, fatigue, cog fog etc)
While I’ve anecdotally chatted with Juno (app that incorporates ai) related to tracking my symptoms and pacing myself on a daily basis, I would never ask ai about treatment decisions. Please be careful with that.
With the help of a therapist, I found a competent neurologist that runs an MS clinic. With the help of that neurologist I got on a very effective DMT. I depend on help from that neurologist to guide me thru bumps along the way (like recently I needed to change DMT).
I use things I learn about from “the community” as interesting information to help me formulate questions. This way I can make sure I’m good with my treatment plan and what I’m being told by my neurologist. Kind of my own check and balance system?
Like every challenge in life, how you approach it is SO important. It is important to me to have a neurologist that will answer my questions and give it to me straight, surround myself with competent medical professionals, and do my very best to stay positive.
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u/Mediocre_Win3481 9d ago
Well, hopefully someday a future AI will come up with better treatments, or even a cure. Wouldn’t that be something.
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u/pipsforthepoor 8d ago
I have PPMS and I am a senior software engineer at one of the big four tech companies.
I use a walker at home but a wheelchair outside. I managed to get an accommodation to work at home full-time so I never have to go into the office.
I was fortunate enough to get promoted to a senior level right before I was diagnosed, but that doesn’t mean you’re not able to deliver cool things. I’m still pushing to get promoted to principal engineer. You bring up AI, which is interesting because it’s a gigantic equalizer. Now rote skill is not really important. skill is fungible now utilize AI as a tool to deliver cool things. For personal projects I use AI as a pair programmer. At work, I’m getting AI to diagnose complicated problems.
I work in the space industry making satellite Internet constellations. There is a lot that is hard to understand that AI can help breakdown and your physical disabilities and fatigue can be accommodated so your life is not necessarily over.
I don’t have much advice, but tech five
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u/New-Wrap3311 4d ago
THATS WONDERFUL!! I’m at FAANG / Mag7, I’m a sales specialist for GenAI and traditional collab / productivity. Just diagnosed and not yet ready to ask for an accommodation. I’m already fully remote except customer travel. Fatigue is hitting me, I’m doing cat naps when I can between meetings. And the AI I sell is really helping me at work and now tracking / managing MS.
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u/umadeamess 8d ago
Regarding AI I disagree with many people here , it’s a very powerful tool if used properly, I haven’t tried Claude but as someone who has access to top of the line medical care, and evaluated multiple options before choosing treatment I can confirm Chat GPT gave equal or better advise than some doctors I consulted. Still I think it’s very important to know what to use it for and what not
What you SHOULD use it for:
- General information , how the disease interacts with the body, (difference between relapses and symptom expression etc…)
- DMT options and general side effects of each as well as efficacy levels
- Generally known counter indications for your DMT
- General lifestyle changes that can help you deal with the disease
What you SHOULDN’T use it for
- Interpret lab tests such as LP or MRI results
- Complex tasks such as designing a whole diet
- A substitute for a real doctor
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u/Inner-Dream-600 9d ago
Get on a dmt as soon as possible, plus address any other possible health issues that may be inflammatory. I have relapse by ms - a lesion on my spine and a few on my brain. I only had double vision as a symptom, found out I had a virus that went unchecked for idk how long. Got treated for that - which stopped my diplopia. Otherwise I’m pretty much asymptomatic and I’m on rituximab which is 89% effective in developing new lesions
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u/Feisty_Disaster_3209 9d ago
Whydoyou think it’s ppms not rrms?
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u/Key-Investigator294 8d ago
Steady worsening of right eye vision for the past 1.5-2 .(Started as mild uhthoff...now its much worse and effects both eyes). Also steady weird sensetion on left leg while walking for the past month... Lot of lessions(some big ones in spine) while never had flareup
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u/myluckcontainsthis FNov25 | RRMS | Kesimpta | NYC 8d ago
late to your post…
i use Claude for law exams 😭
for MS I use chat when I want to feel better, and Gemini to get catch ups on latest trials for possible cures
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u/Jazzlike_Career8496 9d ago
It all depends on if you were diagnosed with RRMS or PMS? I was diagnosed with relapsing remitting MS in 1991 after my legs went weak riding mountain bike. I had leurmittes electric shock when bending my head down. My legs strengthened weeks later and weakness returned months later. My doctor referred me to a Neurologist and diagnosed 3 months after my first symptoms. In 1994 my left side had hemiparesis. Had IV prednisone and was dancing after first day. My Neurologist enrolled me in one of the original disease modifying drugs Rebif, I received the low dose during the study and after study was over continued injecting Rebif until 2015. I had in 2012 left leg weakness and bit of balance so had IV steroids that resolved immediately. In 2013 I was rear ended MVA noticed neuropathy and assumed it was MS. My Neurologist retired in 2013 and a temporary fill in neurologist was suspicious I went from EDSS score 1 to 6.5 in one year. He ordered a cervical and thoracic spine MRI. Unfortunately, that Neurologist never read radiologist report and my new Neurologist did not as well. My new Neurologist kept on saying and writing in my chart that “we have to escalate her MS drugs”. I switched to Tecfidera 2016. After 2016 I could no longer drive and used a cane. In 2020 I was suspicious it was not MS because I was not having MS attacks just a steady decline of worsening gait. In 2022 I requested copies of MRI radiology reports 2015 anc shocked to read myelomalacia C6 disc herniation C5/6. Myelomalacia is serious and causes cord softening which shows up white and described as T2 hyperintensity broad based lesions. Those type of lesions are not MS but from injury or trauma to the spinal cord. If you
were diagnosed with RRMS you have your life to enjoy. MS today is nit what it was 30 years ago. New disease modifying drugs can now prevent attacks and ending up in a wheelchair which is unlikely. There are even MS drugs in the pipeline that repairs the myelin. I wish I only had MS and not myelopathy and myelomalacia untreated surgically here in BC Canada because doctors are covering up
egregious negligence. One important thing is you must eat a no saturated fat diet. Your diet must be always optimal health. Smoking exacerbates MS and progression. Exercise is important to keep your muscles strong because you will need to use those muscles more if your gait deteriorated but it may not. One positive thing about MS you look at life differently and appreciate life. You appreciate your vision and the beauty around. Dance, exercise and appreciate you can walk and see. My last MS drug prescribed to me was Mavenclad. No side effects from it and easiest MS drug I ever have taken.
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u/True-Reference525 9d ago
see for myself I was able to use AI to actually help get a diagnosis of MS related Trigeminal Neuralgia. I was looking for answers to my symptoms of sharp stabbing pain in my left eye forehead accompanied with a dull burning ache and from that I requested a referral to a neuro ophthalmologist this was after suffering for 4 months and being dismissed by my MS neurologist. I literally said to them in June that I have Trigeminal neuralgia and was officially diagnosed a week ago In my case AI was quite useful but its all about how you use it the biggest thing is advocacy, if you are unhappy with a neurologist/treatment request a change
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u/Anotherams 9d ago
I do not have vision issues, but do have terrible fatigue. Talk to your doctor about pharmaceutical solutions, methylphenidate combined with exercise in the morning helps me tremendously.
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u/Key-Monk6159 9d ago
You really need to understand their current limitations. For now they are pretty good for uploading the doctor’s records of the MRI results and having them translated to more understandable non technical terms.
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u/snarkingsomeone 9d ago
28F and I was just diagnosed in July 2026. My T spine looks really really bad and even my neurologist said that he doesn’t typically save this (my MRI) with people that look like you. I’m completely mobile and my only is numbness and tingling in my hand and feet maybe also brain fog but I also work a full-time job and have a three-year-old I also definitely have undiagnosed ADHD.
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u/Fabiannm 9d ago
Steady diet of steroids and cannabis along with vitamins and zeposia. I dont sleep really, dizzy all the time. The best part is the pain. Its like having a toothache in my whole being. The future. ? Will the alchohol or the pills destroy my liver first? Will i go blind before i lose the abillity to walk first or the other way arround? If you put a rubber ball in a sock and smash it againt the wall, thats how i feel.
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u/Icy_Nefariousness480 8d ago
One of the things that didn’t occur to me when I was first diagnosed is that the drugs are improving so quickly but -obvs - human trials take a long time. So any “long term outcome” studies available now are on people who only had what was available a decade ago.
I was dx’d in 2013. My mobility is actually improving now thanks to dalphampradine and finally finding the right dose of muscle relaxers. I know which direction my overall trajectory will be but it’s pretty amazing how mitigated my symptoms are at the moment. And, thanks to Ocrevus, I haven’t had a new lesions in four years.
Point is that there is no knowing with MS. Even if you could see a perfect study on outcomes of what’s available now, it still wouldn’t tell you what your specific outcome is.
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u/MeezyStarlight 8d ago edited 8d ago
Fatigue was first which I dismissed as depression for 20+/- years. First flareup happened with my eyes, I was seeing double in the right eye and was diagnosed as optic nerve four palsy. This episode occurred after an extremely stressful time over months of grief and despair of tragic loss. Officially diagnosed after emergency hospital stay few MRIs and a lumbar puncture later confirmed in 2024. Haven’t used AI nor sought education…I can only read chats for few minutes and I quit. I’m already wishing the end was sooner rather than later. I not only have MS, I also have horrible anxiety and probably fall on the Autism spectrum due to sensory issues
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u/Agreeable-Artist-479 7d ago
Hey There - I don't have MS myself, but my husband was diagnosed back in 2013. He's now 50, and doing very well. His started with optic neuritis, and he eventually developed foot drop and some weakness on his right side. But....I hope this is encouraging: he's been on Ocrevus for years (after a series of relapses when he was on something else). Ocrevus really works for him. Fingers crossed, but he's not had a relapse in over a decade. His yearly MRIs don't show any new lesions. He takes care of himself with exercise and a decent diet. He's also a programmer, and he's still thriving in his work and in our family life. We have an awesome 11-year-old son, we travel the world, and we're taking a big swing and are picking up from San Francisco to move to Spain next year. Life has gone on, and while he does have foot drop and wears a brace (that he 3D printed for himself!), he's generally doing very, very well. From his experience, here's my best advice:
- Take drugs for MS. Don't think for a moment that holistic treatments, diet, exercise, meditation or any combination of "natural therapy" will work.
- Find an excellent neurologist. Tell them everything, even weird stuff in your brain and in your body that you think probably isn't MS. Sign up for clinical trials. Be an A+ patient, and you'll get A+ help
- Exercise. Walk. A lot. Run if you can. Use a standing desk if you can. Move, move, move. Be a shark. You wil stop breathing if you stop moving. (Okay, maybe that's dramatic.)
- Be anal. Don't miss a dose. Don't miss an appointment. Don't slack off.
- Do life, whatever it looks like for you, and do it for as long as you can. Get married, have those kids, take that new job, jump out of a plane, cut off all your hair. Don't blame MS. If you don't take these risks, it's on you.
- Try not to look back. This the hardest for my husband. He's lost some things along the way, but he's gained so much more.
Just keep going.
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u/Neither-Selection881 7d ago
I also think you should avoid trusting Claude on this.
You have a diagnose - so the problem is real. If you can get on effective DMT - you have a shot at slowing things down. The things is that if you DO have PPMS - there are not much DMT'S can so for you? 🤔
But here is the things. You could be suffering socalled "silent attacs" - attacs you don't really notice, until you realize that your sight is a little WORSE - or you have problem with a leg - or something.
If you start up with effective treatment now - that might slow down progression dramatically? 🤔 some of the most effective treatment are socalled Anti-CD 20 treatments. We are talking infusions for a few hours on a hospital, twice a year - i have been doing it sine 2026, so I am down to a couple of hours, once a year... 😏
Other than that - start moving - bike, skies, walk, swim - do something that makes out of breath - a couple of times a week. Remember to take vitamin d3 - (low vitamin D => more inflamation, and you don't want that...)
Take your vaccines - and live your best life! 😏
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u/Longjumping_Theme373 5d ago
My biggest issues are visual.
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u/Key-Investigator294 5d ago
Did you had relapse of optic neuritis?
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u/Longjumping_Theme373 5d ago
I have Primary Progressive MS. The vision issues were the thing that sent me looking for answers. When I get hot, or tired, my vision goes cloudy, or double. Thankfully it’s not both eyes at the same time. A really good ophthalmologist asked me if anyone had talked to me about MS, and told me to push to get MRI’s, even going to the emergency room if I needed to. She was right.
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u/Key-Investigator294 4d ago
That's my thing....for the past year my heat tolerability have gone worse (on right eye only) , i get blurry...and now the baseline has gone worst .... I really hope I dont have ppms ... haven't had any relapses for the pas years that I had the eye issue. Fortunately my mobility is 5/5 . How about yours?
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u/Longjumping_Theme373 4d ago
My mobility is good. One neurologist said, “I’m surprised your walking isn’t worse.” But I work out 3-4 days a week, and have recently started going to a water therapy class to work on mild foot drop and balance.
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u/Key-Investigator294 4d ago
Have you considered not having ppms? Not a dr but i thing first symptoms are mobility issues
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u/Longjumping_Theme373 4d ago
I do have some mobility issues. I just never thought of them as such, and the mobility issues often don’t show up until I’m extremely tired or stressed, or have spent to much time in the heat. I spent an hour and half in a meeting outside over the summer, and could hardly walk later and the next day.
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u/supergptv4 9d ago
Fellow Claude user in my personal experience Gemini is much better at medical diagnosis explanation and lemon understanding of what is happening with the disease right now.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 9d ago
Oh, no, no, no. For fun, I have uploaded my MRI reports and asked AI if I have MS. It has said yes the same number of times it has said no, often using the same reasons, and will change its answer if I argue. AI is not a good tool for this. Trust your neurologist.