having MS and CMT

[Guest guest]

Thanks very much for the research abstract, Gretchen. I know

you hear this many times...but you are an amazing resource for

information!

I'm trying to find as much information as possible for a very

distinct personal mission: I have the unfortunate circumstance

of having both lifelong CMT-1a and, since age 29, multiple

sclerosis. In other words, what CMT doesn't take out, the MS

tends to. Because I would like be able to take one of the

immuno-mediating drugs for MS--the so-called " A-B-C-r's " (for

Avonex -Betaseron-Copaxone-Rebif)I need to know about the

toxicity effects for preexisting CMT. Ironically, CMT-1a, the

variant I have, produces a great deal more pain and gait

disability than my MS. I have been in touch with the Yale MS

researchers as I live near the MS clinic at Yale -- but they

have told me it would take a very careful clinician/researcher

to determine whether the ABCrs would be safe for me to take or

whether they could alter CMT demylination. My situation

represents a statistically small sample of CMT or MS patients,

as it is very rare to have an individual with both disorders.

I'm wondering if any other members also have MS or other

CNS-demyelinating condition and CMT? Does anyone know if ABCrs

have been used to help CMT or prevent further CMT demylination?

Are ABCrs helpful in other peripheral neuropathies?

Thanks also for the URLs for New Balance shoes!

in Newington