@Dmkfl1 

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Dmkfl1

Wrong diagnosis?

I was dx with RRMS without having any lesions as time went on my mobility began to decline, still no lesions. After going through several neurologist I finally got another dx of PPMS. I was placed on the Ocrevus infusion. Currently I cannot walk or even stand. The craziest thing though I have no lesions. Not on my brain or my CNS. I had a radiological lp that came back positive for a autoimmune disorder, not necessarily MS. After reading the new federal guidelines for a PPMS DX I don’t meet the criteria. I’ve had some doctors say yes, it’s MS and others say no. If it’s no then what do I have? I’m sharing this so if someone else has the same problem I would like your thoughts. Also I also have the bowel and bladder issues. Nothing wrong with my eyes and slight numbness and tingling in my arms. I thought MS stood for many scars. I feel my neurologist has just dx clinically and has stopped looking. I’ve been tested from stem to stern with blood test for other diseases that mock MS traits. The only other case I know of is, Wheelchair Komokatzi that’s his handle. Could mass doses of steroids be my answer? I’m open for questions or comments. Thank you.
@Stumbler

@dmkfl1 , the McDonald Criteria, for formally diagnosing MS have recently been updated. But, I share your concerns regarding your diagnosis :- https://www.mstrust.org.uk/a-z/mcdonald-criteria I don't feel that Steroids would be a solution. These are usually prescribed to bring a relapse to a quicker solution.

@Vixen

Hello @dmkfl1, this must surely be a nightmare for you. I can’t see from your profile where you are. Has the prospect of neurosarcoidosis been considered? Just a thought. It’s quite rare, but lots of overlap of symptoms. Good muck with your journey