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Old 10-17-2006, 04:57 PM
hmm_md hmm_md is offline
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Join Date: Oct 2006
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Question HNPP information anybody?

Hi, I just posted my story on a variety of communities here trying to figure out what is going on with me. A very smart individual on the MS board suggested HNPP (hereditary neuropathy and liability to pressure palseys). I went to the link she provided and BINGO! this looks like it fits me to a T. My main issues are a life long tendancy to pinch nerves and go numb for hours to months from silly things like wearing heels (toes), bike riding (hands), using scissors (fingers), crossing my legs, etc... you get the picture. My whole family is like this so I never thought of it as unusual until I left home. So we all live with this, it's just the way we are. My sister has had more severe issues and after a 6 month bout of drop-foot (that spontaneously resolved) she was tentatively diagnosed with Charcot Marie Tooth (CMT). That was later discarded in favor of MS. She didn't like that and hasn't gotten any worse in the 15 years since. I had a nerve conduction study many years ago that showed diffuse slowing in all nerves tested after I broke my ankle and crushed the tarsal tunnel, numbing my foot.

In the last year and a half I have been dealing with one sided facial pain and numbness. It has evolved into a burning that sequentially involves the tongue, then lips, then cheek, then eye, then ear and finally throat all on the left side. It waxes and wanes and seems to do so based on my stress levels. I have had CT and MRI, normal; as well as a battery of blood tests, normal; seen a neurologist who said I'm fine (ahem!) and an ear nose and throat doc who says I have non-motor Bell's Palsey (my research indicates there is no such thing).

So I threw the question out and feel like I am nearing a reasonable explanation. Now is there any treatment?? Does anybody know more about this obscure condition? Thanks in advance for your help.
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