Interesting study - not new- rates of develping SPMS from RRMS

[ddsan]

SP

Diagnosed 22 yrs ago with RR. In the past few yrs the disease has progressed to SP which my neuro told me was not unusual. Although I know I have declined, I still feel fortunate to still be vertical! I use a cane or rotator at times, but still enjoy cooking, reading and sharing life with my 8 Grands.

Wish there was something for us SP's. Can't complain-- at age 73 I have had a wonderful life.

[Jules A]

Diagnosed 22 yrs ago with RR. In the past few yrs the disease has progressed to SP which my neuro told me was not unusual. Although I know I have declined, I still feel fortunate to still be vertical! I use a cane or rotator at times, but still enjoy cooking, reading and sharing life with my 8 Grands.

Wish there was something for us SP's. Can't complain-- at age 73 I have had a wonderful life.

I love your positive attitude and at 73 I'm impressed, MS or not!.

[dyin_myelin]

I received a letter from a friend that I grew up with. She actually saved every note I'd slipped her in class 22 years ago when we were in history together. In a note she photocopied and enclosed in the letter, I had written "my hands won't stop shaking." I'd drawn a crude picture of my left hand-my hands never stopped shaking but I hadn't realized how early the onset of this sx was. The note continued with a rambling, expletive soaked diatribe with many misspelled words aimed at teacher that I would be inclined to say was very out of character for me at the time.

I remember in the Princeton library getting up in 2009 and falling. It remained in my memory because of how odd it was-I knew I hadn't tripped over anything and my leg wasn't asleep. And, massive flare that got me dxed last year with tumefactive MS. Could I have had MS for two decades with only two flares? Should I share this note with my neurologist next time, or could I have my DMD pulled because I would be statistically SPMS now?

[Tawanda]

I received a letter from a friend that I grew up with. She actually saved every note I'd slipped her in class 22 years ago when we were in history together. In a note she photocopied and enclosed in the letter, I had written "my hands won't stop shaking." I'd drawn a crude picture of my left hand-my hands never stopped shaking but I hadn't realized how early the onset of this sx was. The note continued with a rambling, expletive soaked diatribe with many misspelled words aimed at teacher that I would be inclined to say was very out of character for me at the time.

I remember in the Princeton library getting up in 2009 and falling. It remained in my memory because of how odd it was-I knew I hadn't tripped over anything and my leg wasn't asleep. And, massive flare that got me dxed last year with tumefactive MS. Could I have had MS for two decades with only two flares? Should I share this note with my neurologist next time, or could I have my DMD pulled because I would be statistically SPMS now?

This is why MS labels and their cut and dry definitions have always bugged me. I can go back at least 10 years before diagnosis and find evidence of MS, and many people on this board can go back longer than that and yet most of us get an RR stamp upon our official diagnosis. Dr.s have no way of knowing how old your lesions are when they see your initial MRI.

I have never put much stock in the labels. This disease is way too complex (or should I say "messy") to organize into a few tidy classifications. It seems that newbies are more interested in the "kinds" of MS as a way to wrap their heads around their recent diagnosis. I know I was more obsessive about doing the MS math back then. Now I live my life based on my day to day energy and capabilities. I don't look down the road much further than 24 hours at a time.