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Kitt · 04-04-2008, 07:02 PM

Quote:

Originally Posted by sassy

Actually she has CMT, Kitt, which I see in your signature that you have it too? And so, when I searched I see it isn't actually MD either. Am I correct?

I certainly don't know everything but here is some information. I know it's long. CMT is the most common inherited neurological disorder and it is found worldwide. It affects the PNS; outside the CNS. It is rare, so to speak, to start with compared to other diseases. CMT affects around 1 in every 2500 (some experts are saying it's closer to 1 in 2000, others suggest it's closer to 1 in 3000), and we are talking about 4 or 5 cases known within a rare disease where there are 6.6 billion people on this planet. There are a number of types of it that they have found. The CMT 1's and CMT 2's carry the 50/50% chance for each child to inherit it if you have it. Symptoms vary greatly even within the same family. You can be young, old, or in-between when symptoms appear or they may never be that evident but you still can pass it on. CMT 1A is what around 70% of the people have who have CMT. No one, not even a doctor can predict how a person with CMT will end up. It is a very complicated syndrome with many different types. DNA blood testing has been available since 1993 thru Athena Diagnostics. The disease had a name since it was discovered in 1886 by Charcot-Marie-Tooth, the three doctors. Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth. Did you know that Charcot also discovered ALS and MS and Charcot Foot (nothing to do with the CMT foot) and some other diseases. One of his students was Sigmond Frouide (sp). So very much has now been learned about it in just the last 12-15 years. Before that, it was just CMT or Peroneal Muscle Atrophy. They have discovered 33 genes and there is testing for 10 and there are 44 not discovered as of yet.

CMT is an atrophy and MD is a dystrophy. CMTers are born with healthy muscles and the defect is in the nerves that control the muscles. Signals cannot get to the muscles like they should because of holes in the myelin and so the muscles atrophy. That is type 1. In type 2 the nerve itself is diseased and so the muscles atrophy. MD is a disease directly of the muscle itself (you probably know this). CMT is often misdiagnosed as a variety of other ailments including MS , Polio, Fredericks Ataxia, etc. Even though CMT is not MD it is under the MD umbrella as they say along with around 40 other diseases. There is much research going on and again it is complicated.

Yes, I do have CMT and can trace it way back. Thank you for giving me the chance to try and explain a complicated disease

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