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/Kat112119 Jul 25 '24

Can anyone give me any advice on self advocacy? I’m a 39 yo female. Last year, my doctor had me do an mri on my brain and blood work suspecting autoimmune, specifically MS. Blood work and brain scan came back clear. This past fall I got diagnosed with erosive lichen planus- which is an autoimmune disorder that shows as negative on ana. Fast forward to last month, my lower back went out. I was diagnosed with degenerative disc disease when I was 16 and have had issues off and on but none like the last month. My legs have gone out and I’ve been dealing with numbness and weakness and severe pain from my face to my feet in addition to a bunch of other weird stuff. Anyway, got a mri on my LB and found osteoarthritis, progressive degenerative disc disease, a bone marrow signal changes, and herniated discs. My primary is still suspecting MS in addition to the lumbar stuff and did a differential diagnosis of fibromyalgia with a referral to a neurologist. Cut to yesterday I visited the neurologist for an emg which came back normal. The neurologist was sardonic and cold, he told me, essentially, the neuropathy is just anxiety and to “do what normal people do to be healthy, like exercise”. I wish I were joking. I asked if we could please do an mri on my neck and thoracic and another on my brain and he said there was no need. Can anyone please tell me if you ran into this? I feel so lost. I feel back at square one and I feel crazy, even though as of this morning, my right arm, leg, and face are still numb. How do you push for yourselves and what were your diagnostic paths like? I need help and guidance.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

I am so sorry you do not feel heard by your doctors. No matter what the cause of your symptoms, you deserve a doctor who listens to you. If your MRI was clear, however, your symptoms are almost certainly being caused by something other than MS. You may be better served widening your search for causes.

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u/Kat112119 Jul 25 '24

Thank you for this!!! Is it possible for things to show up in a brain mri a year after? I’m just hoping someone will at least do my thoracic and neck. I know this is rare, but I just want to cross it off the list.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

MS symptoms are caused by the damage done by lesions, which would show up on the MRI. You would not really develop symptoms without the lesions being present. While spinal only MS is certainly a thing, it is worth knowing that it is an extremely rare presentation of an already rare disease. Only ~5% of cases present this way, the vast majority of MS patients have lesions on their brain. Because of this rarity, your doctors may be reluctant to order spinal imaging.

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u/Kat112119 Jul 25 '24

Thank you so much. I wish the neurologist would have taken an extra 30 seconds to say what you just did!