[Noidy]

PRMS... and can't find anyone else with it. Is it ok if I join this thread???

[SallyC]

Originally Posted by Noidy

PRMS... and can't find anyone else with it. Is it ok if I join this thread???

Yep, you fit right in with us oddballs..

[Noidy]

Thanks Sally. It feels great to be welcomed. You all are so wonderful here.

[legzzalot]

hi noidy! welcome to crazy town...population....us!

[kicker]

I do feel better in that my neurologist knows there is no med he can offer me, the years on Rebif - I really did feel lousy, no more hours in a MRI (like why, we know I have PPMS. Duh)

My neuro prescribes on a need to basis. I take some anti-pee med (Desicare), some puppy-upper (Amantadine) to go from dead to half dead . AnAntibiotic to ward off UTIs and now we're done. Sometimes I take one Vicodin for Neuropthic pain but really to help me sleep.

I refuse to try anything that doesn't help, waste time shooting the tube,or feel lousier than Age and MS can make me.

[SallyC]

Right, Kicker. I'm SPMS and refuse any meds that don't make me feel better and/or cure me.

I'm thru being a guinee pig, although I kiss the feet of those who are.

[nancymarie]

Hi

My husband who is 61 has PPMS dx in 2000, with symptoms since 1995. It started out with tingling in his big toe which gradually progressed to a limp in his right leg. He progressed very slowly and only went in a wc this year after 14 years since the tingling started. His arms and hands are unaffected and he can still stand for short periods and transfer alone. He self-caths due to urine retention and to prevent utis.

I know that even PPMS is variable and outcomes can range but I worry alot about how this is all going to end.

Does anybody know of anyone with PPMS who had it for years and years and didn't end up bedridden?

My husband doesn't think about the future and I guess he's smart. But I worry alot.

thanks for any responses.

N