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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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.

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.

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.

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

Dear Kap,
What "bacteria" did these physicians identify as causing your small fiber sensory neuropathy?
Johns Hopkins Neurology Clinic, in Baltimore MD does the small fiber sensory skin punch biopsy to absolutely tell whether one has actual small fiber nerve loss and or a small fiber sensory neuropathy.
There are many causes for sensory neuropathies to the whole body, if they have identified a "bacteria" in your case seems like a treatable type. Usually when a small fiber neuropathy is caused by a virus, drug induced, induced by toxic exposure, there is no treatment but to treat symptomatically. Many forms of Small fiber sensory neuropathies pending cause have treatment options, others don't In some of these cases this can run its course and burn out in time leaving residual effects. It all depends on the type and cause of your neuropathy. The Cleveland Clinic Neurology Forum and Massachusetts General Hospital Neurology Forum are two goods websites that have others who have such conditions and information... Also the various Neuropathy organizations on line (Neuropathy Association and Neuropathy Trust are good sources of information.. Various diseases can also cause polyneuropathies for example (Lyme disease). There are also specific types of autoimmune neuropathies that can be treated. I believe that some of your medications may be causing your memory issues. I would go to the www.rxlist.com (http://www.rxlist.com) board and do a search by each drug name you are taking to review side effects- and to review drug interactions. Also for information on SSRI's (antidepressants) go to the International Coalition for Drug Awareness site. If this nerve problem began during or after you used an antibiotic this site may be of interest. www.geocities.com/quinolones/ (http://www.geocities.com/quinolones/)
Also you may want to get a hold of the John Sennoff book Numb Toes..... (don't have the exact title) but he speaks to many treatment options, and supplements and tips fo what may be helpful people with peripheral neuropathy. Most small fiber neuropathies are classified as idiopathic. However in your case if a "bacteria" was identified, bacterial infections are treatable.