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PML A year later and we're still here
May 9, 1999

Dr. Currier. Last year we went through a number of incredible medical emergencies the most catastrophic being the diagnosis of PML. We have controlled the infection at this point. The anti virals and protease inhibitors seem to have it controlled, but we are painfully aware that any time there can be a relapse. My question is this. Our neurologist has recently concluded that there was more than the inital lesion. MRI was impossible due to a pacemaker which was also one of our problems last year. We have attempted a number of neurological drugs to attemtp to control the weakness in his left arm and hand which are nearly incapacitated, and the tremors uncontrollable. We find high instance of the tremors excited by stress or exhaustion. Are there any new neurological drugs for the tremors. We've even tried drugs prescribed for MS and Parkinsons. Or is this permanent after a year? And one more question and please you were quite helpful last year. You guys at the Body even educated our doctor, I took what I found here to him and he found it invaluable. How much longer can we expect the PML to remain in a state of non progression. The neurologists have advised us that the disease is not progressing but it is also not regressing. Thanks.

Response from Dr. Currier

Thanks for the follow-up, I am glad things have gone okay. I am sorry but I am not aware of new drugs for the tremors, I am not a neurologist so I can't be too much help in this regard. Long term outcomes with PML is also something there is not much experience with either. I think that as long as the immune system is kept intact by the HIV drugs the PML might also be expected to stay at bay. As I may have mentioned before, there are studies ongoing to look at the drug cidofovir for treating PML. It might be something to consider. I appreciate hearing your follow-up. All the best in this "new year"


Progressive Multifocal Leukoencephalopathy

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