Re: tremors anyone?

April 8, 2000

tremors anyone?

>Anyone with tremors - do you have any idea where the tremors start? Is

>it a muscle 'thing' or a 'nerve' thing? Have Dr.s even given you a clue

>as to why you get them? Are your tremors worse at certain times? Better

>at certain times, and if so, when? Thanks for enlightening me!

>

>Gretchen

>

I have had tremors, twitches since before being diagnosed with

CMT, my neurologist told me they were from the nerve damage. They get the

wrong messages or incomplete message and its a quiver or something like

that. (I think they are just rebeling to stress of being worked under

damaged conditions!) Mine are worse when tired or ill. >Becky M.

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April 8, 2000

In a message dated 4/8/2000 10:32:00 AM Pacific Daylight Time,

liliwigg@... writes:

<< Are your tremors worse at certain times? Better

at certain times, and if so, when? Thanks for enlightening me!

Gretchen

>>

somedays my tremors and there and somedays they are so mild almost gone. I

think I was told it was a nerve thing.

jenny

April 8, 2000

In a message dated 4/8/00 6:55:53 PM Central Daylight Time, jacee17@...

writes:

<< they are so mild almost gone. I

think I was told it was a nerve thing.

jenny >>

Hi :

In my younger life, before 40, I had twiches, almost not noticed by anyone

but me, in my thumbs & fingers. I had no one to tell me, but I figured it was

my nerves & muscles dying. The muscles are mostly gone now as is the tremors.

I am in my mid 70's now, retired & not too worried now. Fortunately, I never

had the heat & shocking pain you all have mentioned. My CMT must be a bit

different, or may have affected me differently.

God Bless,

CMTer Bud in TX

April 8, 2000

<< Fortunately, I never had the heat & shocking pain you all have mentioned.

My CMT must be a bit different, or may have affected me differently. >>

You are fortunate, as are about 50% of other CMTers. Some docs tell us that

CMT never causes pain, so what we feel must be imaginary!!!! Those of us who

have nerve pain know we are not dreaming it. My neuro knew what I was talking

about right away, thank goodness, so I wasn't told to go see a shrink and get

over it, as some CMTers are told to do.

Do any of you speak Spanish?

Kat

April 8, 2000

This is all quotes from other sources. I don't have tremors.

" CMTA Handbook for Primary Care Physicians says:

" Essential Tremors "

" Tremor is not usually a complaint in patients with CMT, but, when

specifically asked, 40% of the patients respond positively. The tremor

involves mainly the hands, and it may be present at any age but is usually

first noted in the mid-30's. The tremor is not related to the severity of the

symptoms of CMT and has all the clinical features of essential tremor. These

features along with the high frequency of family history of tremor suggest

that CMT and essential tremor are either due to separate genes or are a

variable expression of the same gene. What Roussy-Levy described as a

separate entity seems to be a combination of CMT and essential tremor. "

And from someone else.

" For those who have written about twitching... I would think that twitching

is not tremors. For instance, we can have a muscle in our face twitch, like

around the mouth or the eyes. Even 'normal' people have those. Unless they

get bad and become a TIC they are usually just that... a twitch that is very

very annoying but nothing like tremors. If you have them bad they can become

a big part of your disability. "

From another CMTer elsewhere:

" ... speaking of tremors.... Dr. Sampson spoke to our CMT support group

meeting this last Saturday and one of the interesting things he said was

there was three things with CMT that was hard to treat. He listed them as

Pain, Balance and Tremors. Just thought I'd pass that along! Think all of

you already knew that but nice to have it validated huh?!:-) "

Gretchen, I think you are intereested in first-hand accounts, but this is the

best I can do.

Kat

April 8, 2000

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

April 12, 2000

Hi everyone,

I'm WAY behind on reading posts... Anyway, I have tremors and FATIGUE is

what sets them off. STRESS also triggers the tremors.

If I am tired of in a stressful situation, I shake.

Ruth

>

>Reply-To: CMTUS (AT) e

>To: CMTUS CMTUS (AT) onelist (DOT) com>

>Subject: tremors anyone?

>Date: Sat, 08 Apr 2000 10:24:53 -0700

>

>Anyone with tremors - do you have any idea where the tremors start? Is

>it a muscle 'thing' or a 'nerve' thing? Have Dr.s even given you a clue

>as to why you get them? Are your tremors worse at certain times? Better

>at certain times, and if so, when? Thanks for enlightening me!

>

>Gretchen

>

>------------------------------------------------------------------------

>LOW RATE, NO WAIT!

>Get a NextCard Visa, in 30 seconds! Get rates

>as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.

>Learn more at:

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>

April 12, 2000

Kat,

I had a doctor, sports orthopedist, tell me CMT didn't affect the hands.

LOL, LOL, LOL, LOL

(ANd the reason I can't hang onto anything is?????????)