RE: CMT Disease or Syndrone

[Guest guest]

In a message dated 18/05/00 03:35:41 p.m. Pacific Daylight Time,

charnicoma57@... writes:

<< IMHO it truly isn't a disease, or a syndrone; others may feel better

calling it one or the other but in actual fact CMT is a " birth

defect " . >>

An older woman asked me what happened to my feet ..

I had on low shoes and high pants I guess. I told her It was a birth defect.

Shut her up. She must of thought I was going to ask for a donation for the

march of dimes.

[Guest guest]

Dear Friends;

I just wanted to post my input on the subject of what CMT is

classified. . . versus what it really is.

IMHO it truly isn't a disease, or a syndrone; others may feel better

calling it one or the other but in actual fact CMT is a " birth

defect " .

Again, IMHO (In My Humble Opinion), it isn't a disease for most

disease is aquired or contagious. . . therefore can be cured or

treated. When you say disease, you open yourself up to people feeling

afraid of catching something as in mumps, measles or AIDS. In CMT

there is neither a cure or real treatment of the cause; treatments

are merely symptomatic. But, neither is it contagious.

A syndrone is a group of symptoms that apply to simular

problems. . .as in Downs Syndrone; or Fibromyalgia Syndrone and

Chronic Fatigue Syndrone, which CMT is simular in symptoms to many

things but the cause is entirely different. Syndrone is a modern day

term born out of necessity to minumize the harsh sound when we

say " disease " . Syndrone can mean it doesn't affect two people in the

same way;(a set of symptoms may or may not ALL be present in the same

person with the same conditon) so in this respect CMT might fit.

CMT symptoms are metobolic in nature. . . missing protiens in the DNA

at birth cause many things (nerve damage, muscle atrophy and

weakness, low or high blood sugar problems as in diebetes, and

anemia, as well as autoimmune deficiences; just to name a few) to

deteriate due to deletions and or duplications that cause metobolic

problems. Causing the CMT patient problems in processing and

absorbing certain essential elements to build muscle and re-generate

nerve tissue as well as to heal normally. At this time there is no

way to correct the DNA; therfore no cure or treatment for the cause.

As I learn more about this condition, I can begin to understand why

and how so many problems can arise from this defect in the DNA. The

certain proteins needed in the peripherial nerves (which service

every thing in the body except the spinal and cerebrial or brain

nerves)are mostly affected because it is those certain proteins that

allow the body to regenerate for those functions. This is why some

can have things other than just their hands and feet and legs

affected such as, hearing loss, optic involvement, bladder or kidney

problems, digestive and bowel problems, etc.

It has been a pleasant journey for me to learn with you; and I have

made so many friends and good support here! Together WE CAN make a

difference in awareness and education even among our physicians!

God Bless and Keep you in faith and courage!

Love Libby

[Guest guest]

In a message dated 5/18/2000 5:35:49 PM US Eastern Standard Time,

charnicoma57@... writes:

<< CMT symptoms are metabolic in nature. . . missing proteins in the DNA

at birth cause many things (nerve damage, muscle atrophy and

weakness, low or high blood sugar problems as in diabetes, and

anemia, as well as autoimmune deficiencies; just to name a few) to

deteriorate due to deletions and or duplications that cause metabolic

problems. Causing the CMT patient problems in processing and

absorbing certain essential elements to build muscle and regenerate

nerve tissue as well as to heal normally. At this time there is no

way to correct the DNA; therefore no cure or treatment for the cause.

As I learn more about this condition, I can begin to understand why

and how so many problems can arise from this defect in the DNA. The

certain proteins needed in the peripheral nerves (which service

every thing in the body except the spinal and cerebral or brain

nerves)are mostly affected because it is those certain proteins that

allow the body to regenerate for those functions. This is why some

can have things other than just their hands and feet and legs

affected such as, hearing loss, optic involvement, bladder or kidney

problems, digestive and bowel problems, etc. >>

Libby,

Can you point me to some text or authority on this protein findings. I am

trying to put some documents together for my son for his disability hearing.

His lawyer has never heard of CMT. I'm trying to arm us with as many quotes

from scientist and doctors as I can find. I remember when I was first

diagnosed, the doctor did a spinal tap and said I had high protein levels.

Now it all makes sense to me. I've had digestive problems that the

specialists cannot find the cause. I've fortunately had my biopsy done by Dr.

Dyck from Mayo Clinic. He is one of the leading authorities on CMT and I have

gotten quotes by him off of a web site. Thank you for any information you can

give me on results of these protein findings.

from Indy