Re: CMT 1B information

[Guest guest]

Hi Sherry,

I'm so glad to hear you're learning about CMT here and want to know

more. One of the best books on CMT that I read was Dr. Paolo

Vinci's " Rehabilitation Management of CMT " . I think if you join the

AICMT, the book is free (mind you, this is the Italian CMT website.

I'm not sure how many books are left there aicmt.org ) This book

should also be available through Interlibrary Loan, ask your librian

to check around. Some time ago, I donated a copy to the Santa

Barbara Public Library, also Washington University (where Dr.

Florian ) is, might also have a copy. But really, this is a

book to keep as yours and refer to over and over.

I also learned some from reading all of Senneff's books on

Neuropathy. Go to our " Database " section of , click to open,

click on " Books " or " Booklist " and you can find the 3 of them, plus

other books.

On another side of CMT, I throughly enjoyed " Collison at Home Plate:

The Story of Pete Rose and Bart Giamatti " (Bart had CMT, although

the author, Reston, listed it as MS) You might find some

other helpful books there as well.

I can find about 91 medical abstracts and references of CMT 1B

information through the National Library of Medicine going back to

1988. Abstracts are free, the newer full text papers require a

subscription or a day use fee of $25 or more. These of course are

all written in 'medical speak' and might be difficult to understand.

The most recent abstract on CMT 1B was posted earlier this month and

is titled " Skin biopsies demonstrate MPZ splicing abnormalities in

Charcot-Marie-Tooth neuropathy 1B " from Neurology. 2006 Oct 10;67

(7):1141-6. Go back in our archives for that abstract.

Take this link and then click on 1B for a listing of characteristics

of 1B http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html#IB

This mentions the 1B mutation and the website was recently updated

http://www.emedicine.com/neuro/topic718.htm

This site says 1B is also known as Roussy Levy syndrome

http://ghr.nlm.nih.gov/ghr/disease/charcotmarietoothdisease so you

might want to search under 'Roussy Levy'. I remember some research I

found a few years back suggesting that the genetic background of

persons with tremor was traced back to the first gypsy family known

to have CMT 1B, aka Roussy Levy'. You might want to use dogpile.com

for a search engine - it pulls up more.

Because CMT 1A affects about 70-75% of the CMT population, it is the

most researched about and is also the leader in treatment

possibilities (NT-3, Vitamin C, Onapristone, etc). Keep watching the

posts, because once researchers get treatment/arrestment for CMT 1A

down, even with other genetic mutations, other types will follow

suit.

~ Gretchen