Re: New - reluctant to write

[Guest guest]

Hi Nita, Most of us have some trouble getting diagnosed with CMT. Well unless

someone in the family already has CMT. Seems like that is just part of the

disorder. With a few knowledgeable doctors on your side can really help.

You sound really worried and stressed. Are you OK?

[Guest guest]

-----Original Message-----

From: nitars@... <nitars@...>

< >

Date: Monday, July 16, 2001 12:32 AM

Subject: [] New - reluctant to write

>>>>>>>Welcome Nita! Since your sister has been diagnosed with CMT and with

all your symptoms, I don't see why it would be so hard for you to be diagnosed,

if a Dr. knows anything at all about CMT. Only a few types can be yet

identified by the DNA blood tests. As for NCV/EMG tests, types 2 can be normal

to near normal results. So having a neurologist who knows the types of CMT is a

starting place. The MDA treats and diagnosis CMT so maybe start there? How

old is your son? Mines 11 and sounds a lot like your son. He has foot, ankle,

leg, wrist and hand, neck and back problems and gets tired easy, he has a lot of

muscle cramps and spasms also. If your son was diagnosed with Lymes, you must

live where their are deer ticks at like we do. Good exercises to do are range

of motion, gentle stretches and everyone who has access to a pool says swimming

is good. (the closest I get to a pool is my whirpool tub!) LOL......I find

the best way to do, is to do only as much as you can without over doing, in

other words when tired STOP!!!! ~>Becky M.

Hi. Last night I joined the group. I have many questions and have been

reluctant to write. I think I would benefit greatly from the wisdom of this

CMT community.

I do not have a definitive diagnosis for CMT. My sister and brother both

seem

to suffer symptoms from it, and my sister has been diagnosed with it,

although she was negative for type 1A, and did not have any further blood

tests. My brother is currently being fitted for AFOs. He's had trouble for

years. Both my brother and sister had abnormal EMGs and NVCs. There are

signs

of other CMT in the family...foot surgeries, some vague symptoms reported,

etc. Currently we are trying to decide on the right blood test for one of

us

to take.

I am scheduled for an EMG on Tuesday. After being treated by a chiropractor

for what seemed to be a shoulder/back/neck injury and a numb left arm and

hand, I started having symptoms in all of my extremities. I've had the left

arm numbness for years. I saw my family doctor and was missing some

reflexes.

In my life I've had three broken feet from my ankles giving out and several

ankle sprains. I was discovered to have scoliosis about five years ago, and

this was confirmed by a second doctor.

My questions are these: Does anyone have suggestions on how I can cut to the

chase and get to the diagnosis....that is if my EMG is abnormal? I feel like

my brother and sister have simply been pulled along by poorly informed, and

perhaps a proud group of doctors. I happen to live in a major metropolitan

area and have found some good resources so I may fare better than they have

in getting to the bottom of this.

I'm especially concerned about knowing because I have a son who suffers from

foot, ankle, knee and wrist problems. He is very athletic, but suffers from

extreme fatigue at times. His coaches have punished him for not showing

enough energy at practices, and I've tried to intervene on his behalf. No

one

likes a pushy parent, but I don't want him to feel bad about himself because

of a possible disease. If he paces himself he is a very good athlete. For

years we thought he was suffering from Lyme Disease! I'm not sure how that

diagnosis was even suggested! He doesn't have the antibodies in his blood.

Anyway, I would benefit from your advice and opinions on how to proceed. I

guess I'm putting the cart before the horse....I need the EMG to know

anything I suppose. I've recieved info from CMTA and CMTI.

Also, I'm curious about advice on exercise while I'm waiting for results. I

don't want to do damage but I want to stay active. I haven't been working

since October of 2000 related to a depression which has subsided (my mother

died last December after a tragic illness related to cancer and a stroke).

This spring the depression lifted and I became very active gardening, doing

projects, walking the dog, etc., but noticed that I was developing more and

more pain, and feeling totally worn out. I wasn't getting stronger as I

thought I would with increased activity. I was on short term disability and

I

may be going on to long term disability. I'm a 41 year old female.

Thanks for taking the time to read. Any interim advice would be great.

Sincerely,

Nita