Patients Multiple sclerosis
Unsure of my diagnosis - any advise? Should I get a second opinion?
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i am currently seeing. A neuro for some issues I have with memory and numbness and tingling. I also have something very similar to the MS hug that is almost debilitating when it happens. I had an MRI that showed periventricular white matter hyperintensities. I’m only 36 so this was concerning. No history of HTN or diabetes etc. I had a negative lumbar puncture. Now my neuro is saying she does not think MS but that maybe I was “born with the white hyperintensities” or maybe it’s “normal early aging” and my symptoms are from vitamin issues. My B12 is normal but borderline. vitamin D is low.
She wants to just follow up in 6 months with another MRI. Should I get a second opinion? I have no visual symptoms. Mostly the numbness and tingling in my arms and legs and the pain/pressure/squeezing in my Lowe ribs/upper abdomen that makes it hard to breath. Comes and goes and I have no cause determined yet. Any advise?
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@Sillysarah8466 does the doctor believe it is still MS or unsure of the neuro diagnosis exactly at this time? I know before you said that she felt you were on the right track, but just wondering if there has been any verification on that in the past few months?
Are you feeling any better though since being on the MS medication?
When do you see the doctor again?
i actually went to ANOTHER neurologist and he is a professor and MS specialist. He did diagnose me with MS and said my LP was truly positive and multiple lesions and symptoms. Started me on Copaxone and I’ve been on if for about a month and doing okay. Symptoms don’t get better with the meds so still dealing with that. The worst thing is the MS hug around my torso/chest. It is absolutely terrible and can’t do much about it :(. Otherwise I feel better to know that I’m not crazy and to finally be on meds to prevent progression.
Hi @Sillysarah8466 there are many other diseases that can cause neurological lesions which will cause MS like symptoms. I have Lupus and Vasculitis (Vasculitis can cause all of those symptoms) and MS as I had a positive lumbar puncture and positive serology for both MS and Lupus. I tell you this because I keep being told I’m “complicated” by doctors (I also have the immunoglobulin IgM that’s positive which can cause peripheral neuropathy) I recently started testing for a form of lymphoma that my mother had called Waldenstroms which can cause the neuropathy. I’m frustrated because no doctor can agree which disease is causing very fast spreading symptoms though the oncologist who is smartest thinks it’s mostly neurological (except pain in my thighs which he said he thought could be Vasculitis) he wants me to have a nerve biopsy.
Dont wish for anything just to start treatments because if you take MS treatment and it’s something else they won’t help. I’ve been down this road... I stopped my relapsing/remitting MS drug because I was told I moved to progressive stage and told “those shits probably aren’t helping you” . I understand your frustration but keep probing because so many autoimmune diseases can cause lesions that will cause similar symptoms to MS but be something completely different. The not enough sleep is ridiculous and I’m sorry you’re going through this, however I can somewhat identify as my myriad symptoms can (some neurological and others not like the raging rash on my hands and swollen, painful joints ... my eyes have gotten very bad also. I’m extremely frustrated too. Lyme disease can cause your lesions too .. please keep me posted and my humble advice is to try a rheumatologist, and ask the first neurologist who did the lumbar puncture where they think you should look to identify the cause of your lesions and symptoms... Good luck and please keep us posted.
Sorry .. it’s shots aren’t helping.
Thanks for your advice! I am actually seeing a different neurologist. They did every test possible and neuro psych testing etc and no other cause can be found. He also looked at my LP again and it was actually positive for oligloclonal bands so he is sure it is MS. They did a MUCH MORE THOROUGH neuro exam. Also found a bit of motor issues. So I’m on Copaxone. I know they don’t help with symptoms but also on propranolol for tremor and provigil for fatigue. That has helped quite a bit. So now just waiting on my repeat MRIs in November to make sure nothing has changed. Thank you so much.
I’m glad you have some ease to your discomfort and answers to questions and what sounds like a good doc. Keep the faith. You’re young and I pray your progression is slow. Best to you
@LynndMS excllent advice
@Sillysarah8466 I am glad you are getting some help and doctors that are doing a thorough eval. Never be hesistant to ask doctors questions and more questions when you do not understand or need more explanations. It is your health. Keep us updated.
All the best to you and stay strong.
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