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Old 06-03-2012, 07:04 AM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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You can have both large and small fiber neuropathies at the same time. I do. The small fiber causes the sensory damage and the large fiber causes the muscular atrophy. I have CMT type 2, where the axons die rather than the myelin being affected. From what I know, almost anything can be a symptom of CMT, though some may be rare, the disease affects more than meets the eye.

My son, who also has it, developed shingles along a nerve from his eye to his ear when he was about 10. The doctors then said they had never seen it in children. He now suffers from post herpetic neuralgia periodically and his feet are curling up and in, he is only 27.

I have periodic outbreaks of virulent cold sores which are very painful, again along a nerve near my lips, and which take forever to heal. This last outbreak was accompanied by a body wide sunburned sensation which may or may not be related. The cold sores seem stress related, and I have an odd buzzing feeling along my lips when I have them. The neurontin dampens this as well,it used to be much worse.

I believe all of these oddities can be attributed to defects in our nervous systems, even if the doctors do not see an obvious link. Your lip issues sound related to me and hardly rule out CMT.
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Kitt (06-03-2012)