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Grand Magnate
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Join Date: Aug 2006
Posts: 4,432
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Grand Magnate
Join Date: Aug 2006
Posts: 4,432
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Cmt
Quote:
Originally Posted by Diana Dilley
Hello everyone.
I am new to the site and am very happy to have found it!
I have recently been diagnosed with Charot Marie Tooth Syndrome. This is a genetic neuropathy.
I will be meeting with my neurologist in two weeks to discuss this diagnosis.
If anyone out there has CMT, do you have any suggestions regarding what types of questions I should ask, or give me some advice on your experiences? How are you dealing with the symptoms? I would be grateful for the help.
Di
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Hi,
Questions for you. I have CMT. How were you diagnosed? What type of CMT do you have? Is there a family history of it? Are you seeing a neurologist who knows CMT very well? What are your symptoms?
There is a medical alert list which you could give to your doctor. Click on:
http://www.charcot-marie-tooth.org/med_alert.php
There are a number of drugs we should not take and some are very toxic.
Here is some more information concerning CMT if you haven't already read it. Click on:http://www.charcot-marie-tooth.org/a...t/symptoms.php
You can also review the other information at the bottom of that page.
CMT is the most common inherited neurological disorder. Symptoms of CMT vary greatly even within the same family. Symptoms can become evident when you are young, old, or in-between or they might not be that evident at all.
CMT is under the umbrella, as they say, of the MDA along with 40 others. CMT affects the Peripheral Nervous System; outside the Central Nervous System. It is inherited. We are born with healthy muscles. There are spontaneous mutations but they are rare. Usually, if you go back far enough you will find that someone had it knowingly or unknowingly. It has been misdiganosed as Polio, Frederick's Ataxia, MS, etc.
Muscular Dystrophy is in the Central Nervous System (CNS). A person with MD is born with diseased muscles.
Multiple Sclerosis is an autoimmune disease and is in the Central Nervous System.
CMT is progressive no matter what you do. Exercise within moderation (your body will tell you), swimming is good, eat healthy, try not to be overweight, and stay away from as much stress as you can. Click on:
http://www.charcot-marie-tooth.org/a.../treatment.php
Towards the bottom it mentions stress.
There are many types and sub types of CMT. They can now do DNA blood testing for 22 +. There are 50 types identified so far with no end in site.
Do you wear AFO's or anything like that? I do not as of yet. I do use a cane when I am outside on unfamiliar ground. Inside, I do not use anything.
I hope I have given you some useful information concerning CMT. Just ask. Thanks for your post.
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Kitt
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"It is what it is."
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