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Old 05-31-2001, 10:28 PM   #1
KaP KaP is offline
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Post Small nerve sensory neuropathy?

Has anyone heard of Small nerve neuropathy?
My small nerve bundles were damaged from a bacteria that I contacted and it is not curable. My symptoms are burning pain over every inch of my skin. It feels like I have a third degree burn on my skin at all times. Or imagine you are sitting too close to a roaring fire and can't get away. It is made worse by the sun and the cold, so I hate going outside in the sun. I wear a big hat, long sleeves,gloves and rush to get out of the sun.
The specialist(neurologists)at the OSU Clinic say this condition is more common than you would think. Most people are told they are imagining it. There are autonomic tests they performed to discover what it was,plus MRI,CATscan. They have me on prozac, sonata, elavil, and pain meds. They have already tried neurotin, dilantin and depakote with little success. I have short term memory loss, depression, insomnia, etc.
If you've heard of this let me know.


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Old 06-02-2001, 08:46 AM   #2
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I have heard of an illness like yours that is caused by viral infection of the nerve endings. Last I heard there were some experiments going on where they were using extreme powerful antibiotics to attack the virus which apparently lives in your body once you aquire it. The treatment was being done in a hospital because the antibiotic makes the patient very sick. I don't think it's an established proceedure yet.

I suggest that you use the Internet to make contact with the various research institutions like the University of Pittsburgh and try to get into one of the test groups. That's where you will get the latest, greatest developements.

You say you have been treated at OSU hospital? That is a pretty darn good hospital if you can figure out how to get from one building to another without getting lost. I caution you only about a Dr. Bornstein in neurology. I have seen a couple of reports about him doing evaluations for workers comp. that raises some questions about his integrity. The evaluations he did came out mighty peculiar.

 
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Old 06-02-2001, 09:28 AM   #3
KaP KaP is offline
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Thanks for the information Robert2. OSU said it was a matter of finding the right combination of drugs. Hey, I'm all for that! I've never heard of nor seen a Dr. Bornstein. I saw a Dr. Mendell & Dr. Wicklund. I had a battery of tests which diagnosed my condition. I suppose it would be called a condition, right? Are there any specific places I should look other than U. of Pittsburg?
I didn't get lost at the Clinic, but was confused by the many buildings at OSU Clinic.
Thanks again for your prompt response.

 
Old 06-02-2001, 08:49 PM   #4
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The Cleveland clinic always seems to be pioneering new medical treatments. You might check with them.

Word of mouth is often good way to find where the best hospitals are. Try looking up medical discussion boards on the Internet.

Also look for lists of medical evalutions where they need some guinea pigs. You can get free treatment that way.

There's nothing wrong with contacting pharmacutical companies on the Internet and asking for suggestions and relavent trials.

The Internet is endless. So just keep looking and looking.

 
Old 06-04-2001, 12:09 AM   #5
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Thank you, Robert2. I will do as you suggest and hope some good comes from it. It doesn't hurt to try! If you hear of anything let me know.
Karen

 
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