Hi!


I was dx'd with sm in '04, but no ACM. So no surgery for me. I have C spine issues and other stuff going on too.

Sm is a lonely thing. Not too mny with it. I mean I'm glad, cuz it's a nasty thing. But it makes it tough on us,. cuz there's almost nobdy to talk to.

I've said to medical people I have it (drs, nurses), and even they ask me to spell it.




So it's hard to compare notes.

Where I live I must be the only person with it. and the docs only know what they've read in med school.

I have pain/stiffness upper back/shoulders, loss of hot/cold sensation in hands, hands go tingly if I lift more than 15 lbs. Like today, had to bring in the groceries and my hands are tinglingling still.

I have pain in my left hip, thigh, knee, shocks down leg that one doc thinks could be from sm, but who knows, could be a hundred things.

Currently I am only on topamax for migraines and zanflex, a muscle relaxer.

I see apain doc for the neck, a neuro, and a PCP.

Not like I know much, but I'll help you any way I can - feel free to ask anything, okay?

Hope you have a good team of docs, and are being treated well.

Good luck.

Cathy/Brain