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Old 10-18-2006, 03:41 PM
leaf leaf is offline
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Join Date: Oct 2006
Location: Bristol UK
Posts: 45
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Hi Hmm_md,
You asked about sensory only Bells palsy in your first post. I think its quite common for those with Hnpp to have many sensory, skin numbness- touch, episodes. Usually several days to weeks in duration. I've have heard of others with similar problems as yours.
Do you know if you can get a DNA test done.?
I had nerve conduction tests at the same time as my son, as my doc recognised the family connection for ulnar nerve entrapment.
That prompted a DNA test for me, which took about 8 weeks here in the UK.
Like you say, it almost becomes commonplace in the family and everyone thinks its how it is supposed to be.
I saw a pain specialist, who was open to trying many different approaches, relaxation, meditation, medication, physiotherapy, and pressure relieving aids - tempur matress etc.
I dont think there's one thing that works for everyone, it's different for all, so there is a lot of trial and error.

Another good source of help might be MdaUSA -
http://www.mda.org/publications/fa-cmt.html

jon
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HNPP - Hereditary Neuropathy with liabilty to pressure palsy.
HNPP UK Links and Info
Hnpp Info page : CMTA : CMT UK
Inner Ear Disease
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