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Motor Neuron Disease?
Feb 20, 2003

I keep searching in hopes that someone might be able to help or guide me to someone who will. I have a condition that has affected both of my arms. My neurologist told me it was a motor neuron disease. He said that it was probably due to my HIV infection. Since seeing him I have started on meds for the HIV. He states that all he can due is monitor my condition. When I have talked to my infectious disease doctor about my arm problems, she doesn't seem to think that my arm condition is related to the HIV. I know that my condition is not related to any medications or drug side effects. Have you ever heard of any similar cases? I have had EMG, MRI, spinal tap tests done. The MRI I believe was of the spine. My neurologists thinks that whatever attacked my spinal nerves is no longer attacking and that the damage is done and irreversable. I have seen another neurologist at the Cleveland Clinic and he also believes the arm conditon is related to the HIV with no suggetions for treatment. Might there be a test that could detect what caused this problem? Do I just accept this diagnosis that it might be related to the HIV? Sorry to be so long, but any information or direction would be greatly appreciated.

Response from Dr. Frascino

Hi,

Of course it's difficult for me to comment without actually reviewing your laboratory tests and talking to your neurologists. It appears that you have at least 2 neurologists who think HIV is the culprit, and a thorough neurological workup appears to have been conducted. The confusing point now is that your "infectious diseases" doctor doesn't seem to agree. Who to believe?

First off, is your infectious diseases doctor an AIDS specialist? These are not always synonymous. Second, has your "infectious diseases" doctor spoken directly to the neurologists about your case and the neurological workup? Could HIV be the cause of the nerve damage? Yes, it is possible, but extremely rare. Your physicians need to discuss your condition and come up with a plan. A second opinion from an AIDS specialist may be warranted. You shouldn't be left in the middle, trying to decipher 2 different opinions about your problem. Push your doctors to directly communicate and come up with a plan. Good luck.

Dr. Bob


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