Humble intro

[Guest guest]

Dear Friends,

I have been a member of for a while and was planning to introduce myself

after getting NCS but havent done it yet. I thought I should let the group

know, however, that I am a holistic family doctor in Los Angeles and in my

office, we admister high dose intravenous Vitamin C (25-50 grams per dose) if

anyone is interested in trying it out. It is not covered by insurance, but I

will definitely give CMTers a good price. Also, I prescribe bioidentical

hormones, so if there is anyone out there on Premarin

or Provera, STOP!! These are synthetic and PRO-INFLAMMATORY. Have your doctor

switch you to transdermal estradiol and Prometrium.

As for my story, I am 42, have 2 children and a husband. I thought I had

managed to escape the CMT that effects most of my cousins, since my father had

no gross symptoms. After the birth of my children, however, I started to

notice the loss of sensation in my hands and feet. I thought I was such a klutz

(history of sprained ankles, etc) because I was tripping and dropping things

more than usual. Finally, my father admitted to having some symptoms. After

comparing notes with cousins and an uncle, I realized that all the numbness,

tingling and pain I had were CMT related. Until figuring

it out, I really thought I was going crazy!

Since I was so worked up about it and had no obvious signs on physical exam, my

doctor started treating me like I was crazy and suggested I see a psychiatrist.

The situation was complicated because I also have Primary Hypogammoglobulinemia

and receive

IVIG monthly (and of course, as a holistic doc, I am not happy about this).

This, too, was diagnosed after pregnancyafter I finally switched doctors.

Sometimes, though, I think my symptoms attributed to the

hypogammaglobulinemia (an immune deficiency)--mostly cough, are CMT related, eg:

niggling little symptoms that doctors don¹t like to deal with like reflux,

tinnitus, trouble with thick liquids, etc. It has been so reassuring to read

about others experiences and I look forward to getting to know this supportive

CMT communityand hopefully come up with and effective holistic protocol that

offers some relief.

With warm regards and respect,

Sudarsky, MD FP