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Progressive Multifocal Leukoencephalopathy

My partner was diagnosed with having Progressive Multifocal Leukoencephalopathy, yet
he hasn't been put on any medication for it. The medical doctors want to monitor him for
a while although his symptoms are getting worse. I have suggested to him to get a second
opinion on whether to start some sort of treatment for this. Any help or information from anyone
who has dealt with this would be greatly appreciated. Thanks much.
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Avatar universal
Ok thank you for the information. I really do appreciate it.
I will definitely stay on top of him with his meds. TYSVM!
Helpful - 0
Avatar universal
Once one is diagnosed with advanced HIV disease you always keep that classifcation. It doesn't matter if your CD4 rise up to within normal range. I don't pay that much attention to my numbers as I do to my health and overall feeling. With PML make sure he takes his medication daily. No skipping a dose of meds.
Helpful - 0
Avatar universal
Well yes and no??? I'm confused by it all myself.
His CD count went down to 115 from 199, before
he decided to start taking meds. He's been on meds
for about a month now and his CD spiked to 455, which
the dr was very surprised and said it was all good and meds
were working fine. Until he started feeling sick out of the blue
and went into the local hospital's emergency room. They said
diagnosed him with PML and say he might've gotten PML when
his numbers went down to 115. I guess at one point he was
considered to have advance HIV disease, now I'm not sure if
he is considered to still have it. I'm freaking out because I've
done research and read in an article that most people die within
4 months from PML. I am also positive, yet have been taking meds
for 2 years and am in great overall health. I just wish he would have
started his meds when they first advised him to do so.  It's been about
2 years since he was diagnosed as positive yet he may have had it
for much longer without knowing it. Thanks for any help. TC
Helpful - 0
Avatar universal
Does your partner have advance HIV disease?
Helpful - 0
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