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white matter/CMT 5

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Roman,

CMT 5 appears to be X linked - look at this site - at the very bottom

on both demyelinating and axonal columns, it has listings. (in the

demylenating column, click on " pyramidial signs " . In the axonal column,

click on the very last entry in that column. Remember something too,

CMT and genetics is rapidly changing and while this site is kept up to

date, it may not include everything, or it may be sketchy in info.

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html

These labs are listed for genetic testing for Type X in general:

http://geneclinics.org/servlet/access?

prg=j & db=genetests & site=gt & id=8888891 & fcn=c & qry=2308 & res= & key=p5fjrLbjjC

pvT & show_flag=c

Here's info on Type X (doesn't get into specifics on Type of X - but

provides genetic info, hereditary info, etc. Was last updated August

2005, so there may be newer information not yet posted. There are 2

really good contacts in there, for you and your doctor - one in

Belgium, the other in the NL.

As for the white matter articles, take this link and then in the search

box type in 'charcot marie tooth white matter' The 7 abstracts will

appear so you can read each one. Remember, these are medical and may be

hard to understand - best to just direct your doctor here. I am rather

surprized that your doctor doesn't have these already.

I hope I answered your questions. Remember too, I am not an expert at

all on anything! So I hope you will continue discussing your CMT with

your doctor; perhaps seeking out additional opinions on your type of

CMT.

~ Gretchen

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

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Gretchen,

You're extremely efficient, I just wonder what to do with my doctors

(there are many) - how come they're unable to find articles about white matter

and why didn't they they talk about X link (the only one that suggested it was

my wife, and she's not a specialist in the field!).

A general question: I have claw like & hammer like toes and they respond by

contractions each time I try a massage. Anybody has an idea how to deal with it?

Roman

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