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Old 10-17-2011, 09:42 PM
 
Location: Brawndo-Thirst-Mutilator-Nation
15,148 posts, read 15,198,298 times
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I am curious because I do not really know anybody else with a nerve condition.

I have a herditary form of demylating-periphiral-neuropathy called CMT1a. Basically I was born with defective nerves, specifically the myelin sheath covering the periphiral nerves (basically all nerves excluding the spine and brain) is defective.....prone to getting easily damaged and not healing properly.

My disease causes pain, mainly sharp, burning type pain that does not want to quit. The amplitude and velocity of the nerve signals being very reduced causes a lot of weakness, clumsiness, wasting of the distal portion of the limbs and exhaustion to name a few. I have lots of nerve damage...tingling numbness, burning, weakness....yuck.

I got diagnosed just by chance. Badgered my GP to send me to a Neuro for testing for Carpal Tunnel Syndrome. Haha, the Neurologist was pretty good at picking out really crazy numbers on my nerve tests.......disease was confirmed with genetic testing.

Anybody ELSE, I would love to hear your story???????

Charcot

Charcot–Marie–Tooth disease- (CMT), known also as Morbus Charcot-Marie-Tooth, Charcot-Marie-Tooth neuropathy, hereditary motor and sensory neuropathy (HMSN), hereditary sensorimotor neuropathy (HSMN), or peroneal muscular atrophy, is an inherited disorder of nerves (neuropathy) that takes different forms. It is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease. Currently incurable, this disease is one of the most common inherited neurological disorders. [1]
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Old 10-19-2011, 09:11 PM
 
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My girlfriend has a neuromuscular disease but the doctors aren't sure exactly what it is. All they know is that it's probably genetic because her brother has a milder form of it too.
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Old 10-20-2011, 12:15 PM
 
Location: Brawndo-Thirst-Mutilator-Nation
15,148 posts, read 15,198,298 times
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Quote:
Originally Posted by nimchimpsky View Post
My girlfriend has a neuromuscular disease but the doctors aren't sure exactly what it is. All they know is that it's probably genetic because her brother has a milder form of it too.

Has she seen a good Neurologist?

The place to start is with a very knowledgeable specialist......they will ususally do a couple of tests called a Nerve Conduction Velocity Test and a Electromyograph............these two will tell a good Neurologist a LOT.
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Old 03-27-2015, 01:06 AM
 
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My toddler has just been dx'd c cmt disease.
With me having m.s., it makes understanding it easier, but still very sad my baby has to endure so much pain so young.
God is n control and my prayers are with u all who have posted.
Be blessed.

Last edited by devongibson1; 03-27-2015 at 01:07 AM.. Reason: misspelled word
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