I thought this was a group to help others or supporters of PML.IN MY OPINON this place has about as much info I found on the web itself,,i find no new advice...
... SURVIVORS,Excellent advice from functional medical organizations like NORD,Experiences,questions from supporters and survivors,I think that PML being...
... Thanks for your input, I do not know if you have taken the time to read the posts here or not. Being a long-term survivor of this disease, I've found it...
It's a really bad mistake to assume that we have all the answers here. We don't. Maybe if you tell us what's *wrong*, someone will have experience coping....
Im looking for answers not how your jobs are going or what you do, or are going to do.I beleave we are all good at what we do or did.there is nothing posted...
Steph thank you for the information on the study. We just got back from a POZ cruise and I didn't have a chance to revirew the study until today. Don't think I...
Dawn, Hello to you and your brother. I had been out of town and just catching up on e-mail. It's been 2.5 years and I still don't have full use of my left...
Sorry but I must agree with the others this site has given what my doctor couldn't...HOPE. You are 100% absolutely correct that this is a dreadful disease but...
Steve, it does get quiet around here at times but I believe we are all here reading the messages. I for one was out of town 10/28 thru 11/4. I get the...
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Hi everyone, My sister and I have joined to learn as much as we can to support our mom who was recently diagnosed with PML. She took rituxan during chemo...
Lynn, you didn't say where in FL you are. That would help some. Have you approached any of the HIV organizations? They would be the ones who'd know who to...
I was diagnosed with PML last December after a brain biopsy (a thoroughly unpleasant experience), and since then have felt like the only person in the world...
Keep taking your antiretrovirals and you should be ok. My neuropsychologist was very clear with me. This is *progressive*, meaning that if I fail to take my...
In a word -- YES! I for one have been POZ for 10+ years and was asymptomatic, with no meds, until PML struck last year. Until then, HIV was just something I...
There is one very large truth here. PML is not talked about at all. Not in any of the publications. My neurologist missed it completely, even while trying to...
I actually live in Atlanta-but my parents are in Vero Beach, which is a very small coastal town that probably does not see many cases of PML--if you know what...
Hello to Alan and Everyone-- Alan--I read your posting about PML not being "talked about," and I fully agree with you. Like other rare disorders (there are...
Ya know? Most of my dr's have looked at me as a curiosity, something very interesting that they know nothing about. Not the GP, not the neurologist,...
Interesting that you'd say this my ID doctor and neurologist have never compared PML to stroke but I had med students at the optometry school think I had a...
So far only the neuropsychologist has put this forward. I've still to mention it to the dr and the neurologist. As for disclosure, I can be very tight lipped...
Hi All, My Dad, who has been battling chronic lymphocytic leukemia for 4 years has just been diagnosed (2 days ago) with PML. Currently he is in one of the...
Hi Nina, I am very sorry to hear about your father. Are you in contact with Dr. Koralnik at Beth Israel? My mother also has PML as a result of her cancer...
I am so sorry to hear of your father's illnesses. It's really an awful double blow, but unfortunately that happens to the best of us. I did go searching on...
... am on Citalopran to deal with the mind affects this horrid disease brought with it(I got diagnosed with post traumatic stress disorder as a social?worker...
Ian, thank you. You just put into words (g=four of them) what I've tried to impart on my dr.'s all this time. PTSD is a very apt way to describe what I go...
Did your dad by any chance take the drug retuxin? That is what caused my (or our, as Julie is my sister) mom's PML. Don't give up and don't let your Dad give...
Thank you all for your support and concern for my Dad. Over the past 4 years of cancer treatment he has been treated with Rituxan a few times and Campath many...
