CRPS (-Malissa)

[Guest guest]

Dear and Malissa,

Thanks to you both for referring me to Dr. Boles. I found his email

address online and he immediately sent me the power point presentation

that he made on CRPS, mito, and maternal inheritance! (There's no

published paper yet).

It's amazing to me to see how many kids with mito have CRPS since I

got CRPS as a kid. I don't know whether this adds weight to my

diagnosis of " suspected " mito or not since my neurogeneticist might

already know about this research. I'll ask her when I see her. In any

case, it does make me feel less alone and less unusual.

, I just want to say how lucky your children are to have you.

It's great that you were angry at the doctor who discounted your

child's symptoms and that you were able to find a doctor who could

validate the whole thing. When I got RSD/CRPS (1971!), doctors didn't

know what it was, called me crazy, and my parents agreed with them

rather than supporting me. I realize that my parents were in a tough

position so I haven't held onto anger at them but it sure would have

felt better if my parents had been my allies. The rift between us

lasted years (decades?) until one day when RSD was on the cover of

TIME magazine. Then they believed me.

Also, I don't know if it makes sense to compare my situation and your

children's over the long run, but if it gives you any hope, you might

want to know that somehow I got past the point where the CRPS was

acute. (It remains residual, which isn't remotely as bad). Also, I got

past the point where other surgeries initiated new flare-ups. As an

adult, I have had several surgeries without CRPS flares. One was very

minor--removal of an abnormal mole--but it was on the original RSD

site (my foot) and still no exacerbation of RSD.

Thanks again for responding to my note. I really appreciate the info

(and I really feel for you and your kids).

Hugs,

Shayna

p.s. , sorry about writing my note to Enrique. I was sleepy and

hadn't read your post. I just saw the bottom notes with " CRPS " in it

and then Enrique's name. I didn't realize you actually wrote the post.