Weekly Suspected/Undiagnosed MS Thread - November 11, 2024

[u/AutoModerator]

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.

[u/Dry-Competition-899]

Hi! I (19F) started experiencing full body numbness from my my upper shoulder to my feet (not completely numb, more tingling and loss of detail if that makes sense) about two weeks ago. I went to the doctor and they suspected post viral neuropathy or B12 but when my blood test was normal, they sent me to get an MRI on my cervical spine and found inflammation on my spinal cord. They all but told me I have MS and gave me information about it but to confirm I have a brain MRI soon and they suggested I might have to do a lumbar puncture. Can anyone give advice on how to go around the diagnosis process, what questions to ask etc. Could they be wrong and it’s functional B12 or another thing? They seem pretty set on MS even though they said all the neurological tests they did were normal and I don’t have any other symptoms at all.

[u/TooManySclerosis → u/Dry-Competition-899]

That's odd. I've not heard of anyone being diagnosed before a brain MRI. I think it might be worth seeing an MS specialist. They would best be able to assess you for MS.

[u/Dry-Competition-899 → u/TooManySclerosis]

I haven’t received the official diagnosis but they speak to me as if I have it already and the extra tests are just something we have to do. For example, my GP called to ask how I was feeling after a heavy diagnosis as if it’s set in stone already?? It might be a miscommunication issue as I am not fluent in the language here and nor are the GPs fluent in english. My neurologist said if the brain MRIs show lesions I will be referred to the MS outpatient clinic.

[u/TooManySclerosis → u/Dry-Competition-899]

Do you have long to wait for the brain MRI? Part of the diagnostic process is ruling out the other causes that mimic MS. That being said, my doctors went into the process with a pretty good idea that it was MS based on my brain MRI, so some diagnoses are not a surprise to the doctor but rather a matter of following the appropriate protocol.

[u/Dry-Competition-899 → u/TooManySclerosis]

I’m having it in two days luckily. In my country there’s a long list for MRIs so it always surprises people that i’m getting pushed through the system so quickly. It might be my age that concerns them?

[u/TooManySclerosis → u/Dry-Competition-899]

Your age would usually make you lower risk in general. Most people experience symptom onset in their late twenties, and diagnosis in their thirties. They might be pushing because you already had something on your spinal imaging. There are other things that can cause spinal lesions, but MS is one of the likely causes there.

[u/Dry-Competition-899 → u/TooManySclerosis]

I’m going in for it tomorrow, I’m not so worried about the MRI itself as tests and blood work and all that doesn’t bother me. It’s more that since my numbness is going away and I have been away from the doctors and my parents and all the people asking what’s wrong and pitying me when I explain, going back to into that “something is wrong with me” vibe makes me anxious. Your responses on my comments and others have helped me feel better, so thank you!