Mar 15, 2000
Last year I came down with "HIV encephalitis? which among other problems caused me to have dysgraphia.
My treating doctor who is very experienced in this area says that making a final diagnosis on my OI is extremely difficult and that as well as herpes, HIV may be involved. A more recent suggestion from him suggests that I may have PML? As I understand it only a brain biopsy will finally determine this and perhaps whether other viruses such as herpes and HIV are involved.
1. Is a brain biopsy the only way to work out what is happening to me and my brain?
2. As I understand it there is NO treatment for PML. Is this correct?
Response from Dr. Currier
There is a test that can be done on spinal fluid obtained from a spinal tap called a "JC PCR", which detects the JC virus that causes PML. It would be worthwhile to see if PML can be diagnosed this way before going ahead (bad pun) with a brain biopsy. HIV encephalopathy and Herpes encephalitis are different diseases from PML.
There are ways of treating PML. One is to take potent combination therapy for HIV, which has caused significant improvement in a number of cases. There is also an investigational drug, cidofovir, which is available for CMV infection and can be tried in PML.
BIOPSY SHOWS NADA
New treatments for PML?
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