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@Elisabeth_Turner 

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Elisabeth_Turner

Can sombody please explain SPMS!!!!

So I think (almost certainly) that my RRMS has progressed to SPMS. I was diagnosed 19 years ago. Numerous relapses over the years but always got better and went for months without even thinking about MS. But the last 2 or 3 years it has gradually crept up on me and now I very definitely do know I have MS every single day and hour of the day. My last MRI (4 months ago) showed very little change, so this all points to SPMS. But I just don't understand how it works (bear with me!) RRMS is inflammatory attacks on your myelin. This is why the DMDs work. Many of them work by suppressing different parts of the immune system. That's fine, I get that. SPMS is when "the disease gradually changes from the inflammatory process seen in RRMS to a more steadily progressive phase characterized by nerve damage or loss." You can get active SPMS where you still get inflammatory attacks, and so DMD's may still help. But you can get inactive SPMS where there are no attacks and yet "there is evidence of progression and accumulation of disability". This bit I don't understand? How can it progress, and the disability get worse, if there is no activity?!!!! Any ideas welcomed.....
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@ItsMewithMS
@ItsMewithMS
 

Documentation on the 4 types of MS are pretty readily available. I just had it confirmed by a second Neuro group that I am moving from RRMS to SPMS. Basically I have worsening of symptoms that don't have startling or strange symptoms that come and then go (relapse). I'm rather more on a general decline. I am 54 and was diagnosed when I was 37. I had like 8 relapses in the meantime that were shut down quickly with Prednisone. I was initially on Copaxone and the last few year on Rebif. At this point my labwork is being done to make sure I am a good candidate for Ocrevus. Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear2 Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point3 Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions2 Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery https://www.multiplesclerosis.com/us/treatment.php

@ItsMewithMS
@ItsMewithMS
 

also as explained to me. When I was at Mayo they asked me a lot of questions about what I could do 5 years ago, 3 years ago last year and now. In all that time no new or active lesions and yet I can do less. It was like 7 years ago that I was helping build our horse barn and shed. Climbing up ladders 25 feet, setting rafters, filling holes, plumbing foundation poles, long days, couldn't even dream of doing that now. So-looking at that evidence I have been "progressing" for several years...just not acknowledged. Once it is properly diagnosed it can be properly treated. It is hard to get into a Neuro Psych so that appointment isn't until November...I expect to learn more then. Perhaps he can measure grey matter and white matter and explain this transition to me and what it means