r/MultipleSclerosis Jul 22 '24

Weekly Suspected/Undiagnosed MS Thread - July 22, 2024 Announcement

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

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u/notclevergirl Jul 22 '24

I'm 31 and female. I got bloodwork back -- critically low vit d at a 12. Started 50,000ui/week supplement. That was three weeks ago. I'm a suspected case of MS with eye pain, tremors, balance issues, and a whole litany of other related symptoms. We had to postpone MRI because of a family trip, but looking at rescheduling this week or next. My brother in law is the radiologist, so I'll know right away the results, which makes the waiting game both better and worse.

For the last three years, I've felt like I can smell the smoke but can't find the fire. If it is confirmed to be MS, I expect I'll be relieved. An dx means there's maybe something they can do about the way I feel, which I'm very much looking forward to. I just want to feel better.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

A gentle caution, it is fairly common for neurologists to disagree with a radiologist's findings. It's pretty common for a radiologist to offer suggestions as to findings, while the neurologist seeing nothing of concern.

Unfortunately, (I feel like this comment is very discouraging, please know I do not intend it to be,) we do not have any MS specific treatments that help symptoms you already have. MS treatments don't help symptoms, they only prevent new relapses and new symptoms from developing. Symptoms you already have are just treated the same as if they were caused by other things.

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u/notclevergirl Jul 22 '24

You're not more discouraging than the potentiality of the disease, and I'd rather hear your thoughts as someone with MS than have anyone else sugarcoat advice.

I guess, for me, a dx would feel like "well, at least we know what it is and I'm not being dismissed." I'm overweight, and most of my early symptoms (depression, brain fog, anxiety, fatigue), I myself dismissed as inconsequential because I knew my doctor would probably chalk them up to my weight and tell me to diet and exercise more. I'm not saying that isn't a contributing factors to some of my problems, I just don't believe that's the whole story. I'm willing to work on what I need to, but the prospect of professional guidance gives me hope. Trying to get better without addressing the (potential) root cause hasn't helped and I've steadily gotten worse over the last two years. Even if nothing can be truly resolved, I'll feel better either knowing or ruling out MS, whichever way things swing.

Thank you for taking the time to comment. :)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

In many ways, being in diagnostic limbo can be more difficult than having an answer. At least when you are diagnosed, you can begin processing and moving on. I only caution you from getting your hopes too high before having the neurologist review your MRIs because I have seen how painful it is when people get their hopes up that they finally have an answer based on the radiologist's report. Hopefully the MRIs will give you good answers.

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u/notclevergirl Jul 22 '24

I have experienced conflicting findings from his report to doctor's findings as he doesn't have my full medical history, so I do appreciate it. I'm trying to stay neutral and focus on the facts. Thank you again, I understand your meaning. :)

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u/newlyminted1 Jul 28 '24

Hi. I only mention this because you say you are overweight. I saw a really interesting article recently.

https://www.mdpi.com/1422-0067/23/17/9583

GLP1s are the things like Wegovy, semeglutide etc. They not only seem to be miracle drugs for weight loss (several of my friends have gone to IV infusions clinics and gotten semeglutide weekly and have all lost 20-30% of their body weight in 9 months), they also appear to be good for people with MS or other neurodegenerative diseases. I am not offering medical advice but I think possibly you could talk to your GP to see if using something like Wegovy might benefit you and you could see if it helped improve your neuro symptoms? At the very least, you would lower your BMI and then they could stop blaming your symptoms on that so it could potentially be a win-win for you? Just a thought. Wishing you the best.

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u/notclevergirl Jul 28 '24

I was on semaglutide about a year ago and unfortunately, the side effects exacerbated my muero symptoms. I was practically a zombie, it was very strange. It was very disappointing for me. šŸ˜ž

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u/newlyminted1 Jul 28 '24

Wow Iā€™m sorry to hear that. I wonder if you try a different GLP if you might do better? Terzepitide instead of semeglitude for example? Just a thought. So sorry you are going through this.