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Old 12-28-2006, 07:52 AM #7
euphonia euphonia is offline
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Join Date: Sep 2006
Location: dx'd MS & HNPP 7/03
Posts: 37
15 yr Member
euphonia euphonia is offline
Junior Member
 
Join Date: Sep 2006
Location: dx'd MS & HNPP 7/03
Posts: 37
15 yr Member
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Quote:
Originally Posted by cathy911 View Post
For 8 years I've been diagnosed with heriditary sensory neuropathy until two weeks ago. My neuro looked in my eyes and decided he'll be doing an MRI after the holidays and now thinks I may have possible MS. What's up with that. Is this typical to start with a neuropathy diagnosis and then change to possible MS......
Cathy

Hi Cathy,

I was diagnosed with both MS and a hereditary peripheral neuropathy (HNPP) at the same time. My EMGs show peripheral nerve damage, making it likely that I have HNPP like my dad and my cousin. I also passed all the tests for MS -- lotsa MS-specific brain lesions, oligoclonal bands in my spinal fluid, and abnormal evoked potentials.

I see you mentioned "hereditary" neuropathy. Does that mean you've had any genetic testing for it? My dad tested positive for HNPP, so they gave me the dx since 50% of their offspring will have it also.

Here's a short description of HNPP:

http://ghr.nlm.nih.gov/ghr/disease/h...essurepalsies/

The peripheral nerves are all the rest of the nerves in the body that are outside the brain and spinal cord. That means not only the arms and legs, which are common sites of neuropathy, but also the nerves that go to the organs, muscles, and skin.

Just for the sake of general information, here's a good description of peripheral neuropathy from Mayo, including several pages:

http://www.mayoclinic.com/health/per...opathy/DS00131

"The extensive network of peripheral nerves includes the motor nerves, which help your muscles contract, and the sensory nerves, which allow you to feel a range of sensations. In addition, your peripheral nerves help control some of the involuntary functions of the autonomic nervous system, which regulates your internal organs, sweat glands and blood pressure."

The Mayo site goes on to say, "Peripheral neuropathy isn't a single disease, but rather a syndrome with many causes," although in the hereditary cases the cause CAN be found.

I happen to think that MS is also a "syndrome" rather than a single disease, but that's another thread entirely.

I've always described HNPP as pretty much MS without the brain lesions, but I've recently read that researchers claim to have found lesions in HNPP patients also. Good luck in your testing, and I hope you don't have MS.
__________________
Susan
I got an "instant" dx of both MS & HNPP in July, 2003, but had likely had MS for at least 30 years by then. I've never taken any prescription meds for either MS or MS symptoms (except 1 yr on LDN).
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