tremors questions

[Guest guest]

Hi Kathleen,

I have 2 questions for you - what is this Rousy-Levy type of CMT and

what is this propanolol you take for your tremors?

Gretchen

UniqueCMT@... wrote:

>

> I have had tremors since I was a teenager in junior high. I have heard many

> people with CMT get tremors of their hands, but I also had tremors of my

> head; everyone always thought that I was just a very nervous person. It was

> not until I was 27 years old when I was finally diagnosed with a rare type of

> CMT called Roussy-Levy. I finally knew that I was not having panic attacks;

> it was a symptom of this type of CMT. I now take 400 milligrams of

> propranolol daily; it has helped a great deal. Though I still get tremors,

> it is not as pronounced as it used to be.

>

> Kathleen

>

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[Guest guest]

Roussy-Levy is a rare form of CMT; my neurologist could not tell whether I

had type 1 or type 3 CMT. He is certain that I do not have type 2. My type

of CMT began when I was only 2 years old; Roussy-Levy begins at a much

earlier age. I learned to crawl & walk at a much slower pace. It wasn't

until my teen years when the disease began to progress; lately it is

progressing much more rapidly. I use a wheelchair if I am outdoors, but in

the apartment I use a walker. I have leg braces if I must use stairs, but

being that they are not very practical in the house, I am barefoot most of

the time. It is so much more comfortable to use the walker while barefoot.

My doctor prescribed propranalol for my tremors; it is actually a heart

medication that was found to be useful for tremors. Propranalol is a generic

form of Inderal; it is used for patients with high blood pressure also. Of

course my doctor started prescribing a low dosage, 10 milligrams, and slowly

I went up to 400 milligrams. The dosage is not the same for all patients;

some need a lower dosage while others need a higher one. It is not

recommended for patients with respiratory problems. By the way, I live in

Brooklyn, New York, and am 35 years of age. I hope this has helped someone

else who may have pronounced tremors. In answer to another question about my

family history; no one in my entire family has CMT. One doctor told me

years ago that he thinks there was what's called a spontaneous mutation in my

genes. He thinks this explains why it suddenly occured in my family, and he

said that it may never occur in my family again. He couldn't be positive,

but it might not be hereditary in my family, which is rare but does happen.

Kathleen