How many years did it take to become SPMS or were you DX'd out of the gait with SPMS, and if you were how many years do you think you had some form of MS before the DX?
I've been Dx for 12 yrs, just recently told that I'm SPMS. I think I was diagnosed during my first exacerbation; don't think I had MS before that.
My MS went misdiagnosed, undiagnosed, etc for 20 years so when I was finally diagnosed last year at age 65 I was diagnosed with SPMS. My early symptoms were muscle spasticity when I sat for long periods of time. 20 years ago I didn't go to the dr. for that.
Then in 1991 I had some right leg weakness..by the time I got to a neuro it was getting better so it was diagnosed as a pinched nerve. Then I had lower back issues and was always sent to PT..and it got better.
In 2007 I was having to walk with a cane...neuro sent me for more PT and it got better. Finally in 2010 I was having balance issues, walking issues, etc and my neuro sent me to a specialist...diagnosis SPMS.
I am greatful that for 20 years I was able to function and work and enjoy doing things. Sometimes things have to get worse before a diagnosis can be made.
I was diagnosed over 20+ years ago with RRMS and then two years ago my Neurologist said I think you have progressed to SPMS OR IS IT PPMS? I don't take the CRAB drugs anymore as they were no longer helping and just making me terribly sick.
I remember things first going wrong in the early 1980s (falls, etc.). I was dx'd as R&R MS in 1995. I've never gotten "well" since this time nor returned to anything close to "normal".
I never took the CRAB drugs either nor have I taken steroids. I do not believe these drugs would/will/could help me in anyway.
I also believe that MS may be a lot more than an auto-immune disorder. Being it is unknown what causes MS, I refuse to experiment on myself until I find out WHAT IS THIS ANYWAY? *sigh*
Then in 1991 I had some right leg weakness..by the time I got to a neuro it was getting better so it was diagnosed as a pinched nerve. Then I had lower back issues and was always sent to PT..and it got better.
In 2007 I was having to walk with a cane...neuro sent me for more PT and it got better. Finally in 2010 I was having balance issues, walking issues, etc and my neuro sent me to a specialist...diagnosis SPMS.
I am greatful that for 20 years I was able to function and work and enjoy doing things. Sometimes things have to get worse before a diagnosis can be made.
I never took the CRAB drugs either nor have I taken steroids. I do not believe these drugs would/will/could help me in anyway.
I also believe that MS may be a lot more than an auto-immune disorder. Being it is unknown what causes MS, I refuse to experiment on myself until I find out WHAT IS THIS ANYWAY? *sigh*