| the neuropathy, if that's what it is, won't go away
Aug 11, 2004
I've been HIV+ for over ten years now. I've recovered from lots of different side effects from meds over the years but I've been off the D4t for two years yet the pain, unsteadiness and general weakness in both my legs, that has been diagnosed as neuropathy, is still getting worse. During my last doctor's visit, we discussed the possibility that it could be something else that has me out on disability. I'm currently on acyclovir, norvir, reyataz, viread and epivir. What should I do? What should I test for? I'm very limited in health coverage so I can't just go for everything under the sun. My numbers are great, so I'm hesitant to change regimens. I'm at the point where I'm even wondering when should I consider using a cane. Very scary..
Response from Dr. Conway
There are a number of things that can account for symptoms of pain and unsteadiness in the legs that can be easily diagnosed by a neurologist. The first thing I would say is to try to confirm by nerve conduction studies that the problem is, indeed, neuropathy. Then, there are a number of blood tests that can be done to exclude other causes of neuropathy that could be treated specifically (thyroid disease, B12 deficiency, syphilis, and others). This could yield a specific treatment. if it turns out that there are no other causes, then we would be left with attributing the symptoms to HIV disease or the treatments you have received for them. In that situation, we have had good success with drugs such as amitryptiline or gabapentin. In my experience, I have found that people are sometimes a bit timid in the doses of medication that are being used, and once a decision has been made to treat, then the trick is sometimes to increase the dose of medication rapidly if the lower doses are not working. The use of narcotics is to be avoided, as this can cause more problems with addiction than anything else.
Of course, if this does not turn out to be neuropathy, then there may be a number of other issues to address...
Open enrollment for neuropathy study
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