[Lorraine Shade]

I was first diagnosed with RSD, but now they think it is Charcot Marie Tooth. It is a disease of the peripheral nervous system. I was wondering if there is anyone out there diagnosed with this disease. I would appreciate any input.

[mrsD]

Welcome to NeuroTalk...

please take a look at this:

http://neurotalk.psychcentral.com/thread121564.html

[shikantaza]

Hi Lorraine,

I am so sorry to hear that. I don't have Charcot's (I do have a whole lot of other stuff) but I thought I should let you know that I am a carrier. A few years a neurologist named Mark B. Bromberg, at the University of Utah asked my family to participate in a study - because, unfortunately, my family lineage has a astonishingly high rate of Charcots (four cousins and an uncle), but all in the boys. I know I am a carrier because I have the freaky feet (God now I think about it, that is one of the only things I haven't been checked out for yet with my own deal, LOL).

Anyway, this Bromberg guy is one of the top neuro's and researchers in the field specializing in Charcot Marie Tooth Syndrome, perhaps it might be a good idea to track him down and see what insight you might be able to glean from him. He seems like a pretty likable guy which is most unusual for a Neurologist. ; )

Best of luck. (Maybe were related)

[babyloves0206]

My son was diagnosed at 16 months by a DNA test. His father, grandfather, greatgrandfather, and several paternal uncles have the disorder. It has affected my 9 1/2 yr old son more than his 32 yr old father. We go through a lot between wearing AFO braces, being the not so great athletic kiddo even though he tries his hardest, etc... He sees a neurologist in maine because our current insurance won't pay for us to go outside the state. You can research the disorder on the CMTA.org website (i think it's .org) The disorder is part of the muscular dystrophies so it is also found on that nation website as well. I do know that my ex husbands family has 2 female carries but non that are symptomatic. I did have my daughter DNA tested when she was born which resulted in a neg test. There are 5 CMT clinics in the US. They are listed on the CMTA website. I know the one closest to me is at the John Hopkins University in MD. Their website would be helpful too. I hope this info is helpful and good luck.

[Kitt]

Check out "PN Tips, Resources and Other Treatments" under the Peripheral Neurpathy forum. There is lots of information posted there pertaining to Charcot Marie Tooth Disease.

CMT1A is the most common type. And there are many. Symptoms vary greatly even within the same family. What one member is diagnosed with is what the other member will have. No one, not even a doctor, can tell you how you will end up.

CMT with all it's types and subtypes and many more being found is a complicated syndrome. Much research is being done concerning it. There is no cure/treatment at this time.

[Spiney95]

Originally Posted by shikantaza

Hi Lorraine,

I am so sorry to hear that. I don't have Charcot's (I do have a whole lot of other stuff) but I thought I should let you know that I am a carrier. A few years a neurologist named Mark B. Bromberg, at the University of Utah asked my family to participate in a study - because, unfortunately, my family lineage has a astonishingly high rate of Charcots (four cousins and an uncle), but all in the boys. I know I am a carrier because I have the freaky feet (God now I think about it, that is one of the only things I haven't been checked out for yet with my own deal, LOL).

Anyway, this Bromberg guy is one of the top neuro's and researchers in the field specializing in Charcot Marie Tooth Syndrome, perhaps it might be a good idea to track him down and see what insight you might be able to glean from him. He seems like a pretty likable guy which is most unusual for a Neurologist. ; )

Best of luck. (Maybe were related)

Do you have any relatives in the S. Central KY area? I chatted on a board a few days ago with a gal who has Charcots. It runs down BOTH sides of the family and her three (I believe) sibs all have it. It was just dx'd in this generation as all other cases have been mild. Evidently it goes back several generations. The family is being studied at Vanderbilt U. in Nashville.