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?
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.
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.