Last reply 1 year ago
Diagnosed with Secondary Progressive MS

Has anyone else being given a diagnosis of Secondary Progressive MS without ever been aware of the Relapsing Remitting phase. Never aware of ever having a relapse?
I appreciate relapses might be hard to determine and a neurologist is an expert at evaluating your description of events up to this point.
What would prompt them to go for Secondary and not Primary?

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lorag
1 year ago

I think it’s when your symptoms don’t go away. I started with relapse remitting then a number of years later the weakness on my right side and numerous other new symptoms wouldn’t go away just stayed weak.

Do you have a symptom that isn’t going away.


hels99
1 year ago

It sounds odd but it probably doesn’t make any difference in terms of treatment – there are DMDs coming through for progressive MS now.
When I was diagnosed, my consultant said I’d probably had MS (RRMS in my case) pretty much all my adult life on the basis of a couple of (minor) episodes of numbness that I remembered during that time (the skin on my right shin went numb once upon a time and I lost sensation in half my face for a while years ago. These were odd enough for me to go to a GP who basically said ‘that’s odd, now go away’ which is what I did without worrying about it). So, if you had symptoms beforehand that resolved, they have probably made the SPMS diagnosis on that basis. Obviously though I know nothing and am guessing!
It worth asking them though for your own peace of mind.


stumbler
1 year ago

@paulx , a diagnosis of Secondary Progressive MS (SPMS) is based on your clinical history, and can seem subjective. You may find more answers here:-

https://support.mstrust.org.uk/file/secondary-progressive-ms.pdf


louisa
1 year ago

Hi, Yes, I had the same experience. I went straight from not knowing I had MS to being told by the neuro that I had SPMS. My nurse doesn’t agree though and thinks it it more likely that I have PPMS. As hels99 said it probably doesn’t really matter. My nurse told me that she would recommend future medication based on me and my condition rather than a SPMS or PPMS label. I hope that helps…

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