CMT and Guillain-Barre Syndrome

[Guest guest]

Interesting, the article that described the man planning to walk to

Toronto. My little brother and I both have CMT1A. He is 15 years old.

A couple months ago, one day he started to lose feeling in his arms

and legs, and within two days he couldn't stand or do anything. They

diagnosed him with Guillain-Barre Syndrome. He was in the hospital for

about two weeks, and then in a Rehabilitation hospital for another two

weeks. Now he's in a wheelchair, and making a very slow recovery. He

can wheel himself around, and can walk a short distance using a

walker, but still is nowhere near what he was before this whole thing

started. Guillain-Barre Syndrome is supposed to be really rare. I

wonder what the odds are of it affecting those also affected with CMT?

Rena

[Guest guest]

Rena-

For several months, my neurologist thought that I had both CIDP and CMT. CIDP is

a more chronic form of GBS. There is a good article on the GBS website that

talks about the link between inherited neuropathies, specifically naming CMT,

and GBS/CIDP. I think that their website is www.gbsfi.com.

Has your brother tried IVIG therapy? They use this for CIDP people...they may

use it for GBS too. Worth checking into, but the cost if very expensive.

Usually, if it is CIDP, their symptoms improve dramatically. Of course, if you

have CMT too...who knows.

There is someone on this board that has been diagnosed with both CMT and CIDP

too...maybe they will have some good info for you/your brother.

Amy Hodge