Mild GBS… or Could it be CMT??

Has anyone ever heard of Charcot-Marie-Tooth disease?? It has nothing to do with teeth, and can sometimes masquarade as mild GBS.

I don’t know if anyone remembers me, but back in November, my husband had double vision, Bell’s palsy-like symptoms and severe leg weakness. It came on very quickly and he could barely walk at one point. He was tenetively diagnosed with GBS.

Well, we saw a neuro at Froedtert, a teaching hospital in Milwaukee, who noticed that my husband has very short fingers, slight hammer toes and small feet with seriously high-arches. I always thought that his hands and feet looked alittle funny, but never thought too much about it since his mom has the same hands and feet. The neuro said that it was indicative of a genetic inherited disease called CMT. It is a degenerative nerve disease that some people don’t even know they have until it gets worse as you get much older. His mom most likely has it too since she has what she calls “carpel tunnel” so bad in her hands that she can hardly pick things up. My husband has always had problems with “carpel tunnel” too.

The connection with GBS is that there is a huge list of drugs that can cause, to quote one article, “mild Guillain-Barre-like symtoms”!!! The article had a laundry-list of drugs, most of which are neurotoxic meds, like chemo or cancer drugs (some of which are being used in low doses to treat rheumatoid arthritus or psoriasis), but also IV pennicilan and nitrus-oxide of all things! My husband was on a drug called Methotrixate for psoriasis prior to his first symptoms appearing. Although the doc would not make a positive diagnosis without genetic testing (thousands of dollars..I think we’ll pass), or say for sure the meds had anything to do with it, but he did think it was more likely complications from having CMT than GBS. Either way, it seems more likely to me too. We’re happy with this diagnosis. GBS just didn’t seem to fit.

Just a thought for some of you that are having a mild presentation of what appears to be GBS, but the doctors arn’t sure. Ask them about the possibility of CMT, especially if you have Fred Flintstone feet or were on any kind of med prior to it happening. It’s important to get the genetic testing if you are thinking of having children. There are some strains of CMT that are more likely to be debilitating if passed onto offspring, even if it is not a problem for you. There are some good websites and articles about CMT you might want to check out.

My husband is doing much better, with some residual weakness in his legs going up stairs and such. Take care everyone! Always be your own advocate! It took three neuros and countless tests and gp docs to get this answer!