Re: My father was just diagnosed...Need some help sifting through information

[Guest guest]

,

I was diagnosed as a child, have tried many things: foot surgery,

physical therapy, stretching, swimming/aquatics, biking, yoga,

pilates, meditation, Ritalin for fatigue in high school, Valium, then

Robaxin for muscle spasms, Kava, Vitamin E, blackstrap iron,

potassium supplements, a " trial " of physotigimine, 2 or 3 other meds

from time to time for tremors, custom made in-shoe orthotics.

I'm 56 with Type 2 CMT and lead a very active life. Now I just take

1000 IU of Vitamin E per day, I'm in the pool about 4 days a week, do

some Pilates, for the past two years have been eating a brown rice, fruit and

vegetable diet, and for the past 11 years have been drinking Fijiwater, which

has calcium, magnesium and silica in it. I make time for meditation each day.

The Ascorbic Acid Vitamin C trials in the USA are ongoing for a few

more years. In the meantime, I recall that one of the Euro trials

will have results soon, as well as the trials on kids from Australia. Many of

our members take Vitamin C on their own, also Citicoline.

As for what's toxic, take a look in our Medical Alert folder. You can find out

more about this by going to our " Files " section and

also searching our " Message Archives " .

I hope when Mark (from Boston) sees this post he'll respond. He also heads a

support group there.

There is a clinical trial ongoing for Coenzyme Q10

http://clinicaltrials.gov/ct2/show/NCT00541164?

term=charcot+marie+tooth & rank=1

A synthetic type of progesterone is being researched in Germany - one that isn't

toxic to the liver. Gene therapy is relatively new - in Preimplantation Genetic

Diagnosis for example, for some types of CMT, the CMT gene can be removed,

thereby not passing on the inheritance for it and resulting in CMT-free

children.

Gretchen

[Guest guest]

Hello ,

In response to your query for CMT specialists in the Boston area, I suggest that

you might want to attend our next Support Group Meeting which will be held on

Saturday, January 24th from 1-3 PM at Beth Israel Deaconess Medical Center - 330

Brookline Ave.- Boston, MA - Trustman Boardroom - 2nd Floor - Shapiro Building -

East Campus. In addition to a presentation by a specialist from NOPCO, we will

also have a CMT staff physician from BIDMC addressing us as well. He would

definitely be able to steer you in the right direction. Please refer to the CMTA

website for more information.......www.CMTAUSA.org

I do hope that this provides you with a good starting point. If I can be of

further assistance, please do not hesitate to contact me at your earliest

convenience.

Sincerely,

Mark