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hiv myelopathy/myelitis
Feb 16, 2007

I see a Great Hiv DR. a Great Nerologist and a Urologist Also Pain Management DR. Resently had to start FLOMAX due to problems urinating, and my leg pain still seems to get out of contol at times. I started on hiv meds sept.03 When T-cell dropped to 300. since then T-cell went up (850) and viral load way down. Pain meds just don't seem to help at all at times, I even take B-12 shots and folc acid.Any new studies out there, in Tampa FL.or close by, I'd even go to Atlanta,GA. I would donate my body to science, cuz I know theres gotta be others out there dealing with same kind of Issues, severe pain and fatige.It Just gets so Debilatating and exaust me.I'd do anything cuz it make me crazy to feel so bad at times and I know there are other doctors who just aren't aware how Painful it gets,My only next hope,per my doctor is switching most of my pain/nero meds. I'm just looking for more help, and more hope,Links or university That might be doing reaserch. Thanks for any advice in advance.

Response from Dr. Henry

It sounds like you have a tough problem with a large team of qualified specialists engaged in your care and trying to relieve your symptoms. Often pain control is a trial and error process whereby one approach is tried and then another until a decent match is found for a given patient. Topical medicines (capsaicion, lidocaine), nerve stimulations, accupunture, an increasing array of meds for diabetic neuropathy, and other approaches might help individual patients. Distinguishing between myelitis/myelopathy and peripheral neuropathy is important to sort out possible treatment options that might offer some benefit. Many efforts to develop some form of specific therapy (like nerve growth factors) have met with disappointing results in studies underscoring the frustration many feel about the absence of more effective/targeted interventions. KH

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