Hi everyone. Now that doctors have basically given up on my partner, I thought that this might be a good time to get a second opinion on his prognosis or...
http://www.mountsinai.org/Find%20A%20Person/dirProfile.do?pid=0000072500001497207392 dr. Simpson is a neuroaids specialist at mount Sinai hospital in nyc. ... ...
50 is not bad. It takes time for the immune system to come back up. The PML is a different virus that clinical studies have shown improvement with 30 mg of...
I wanted to follow up with you all regarding that PML sufferer in Oakland... ~~~ On Jul 1, 2009, at 10:15 AM, Claire Siverson wrote: There seems to be a real...
Where are you? In NYC, Mount Sinai has a PML treatment program. ... ·´¯`·.¸. , . .·´¯`·.. ><((((º>`·.¸¸.·´¯`·.¸.·´¯`·...¸><((((º> ...
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Ron
rjc74@...
Jul 1, 2009 11:22 pm
Thank you for the update, Matthew. •Sent from my iPhone 3G ... Thank you for the update, Matthew. •Sent from my iPhone 3G On Jul 1, 2009, at 4:46 PM,...
I have several names for PML at UCLA (Univ of CA Los Angeles), but I know CA doctors won't do anything via email/phone unless you've been seen in person as a...
Avery, I tried sending a post yesterday but there seemed to be a problem so am sending one again. Besides Dr. Koralnik in Boston, who is a major expert in PML...
Dear Claire, A potential resource for finding the right place for this young man is the Family Caregiver Alliance. While they are headquartered in San ...
I don't know anything about this active, recruiting PML study, but it might be an option, and it appears they might be in NYC (appears you are in NY): ...
hey folks. living w/pml/hiv for ten years. Much damage to my gyroscope (ability to walk.) Much improvement is speech. Question is, does it get any better?...
although everyone heals differently, this group is testament to the fact that is does get better. I am also 10 yrs on and my walking has improved, but my...
1109
rarity@...
Jul 6, 2009 4:36 pm
Hi Kathy, One of the databases that NORD relies upon is open to the public, and I will provide basic directions on how to use it. It's a publications database...
It was so good to get a responce from you. Guess I needed a wake up call.. My speech, like you is s till strained, find writing a chore but can still...
Mike - It sounds like you're doing ok physically. Mentally, not so much. Surving PML is such an incredible event. Myself, I'm four years out (last month)...
Can I ask are either of you still in speech therapy? My Love still has Sp OTpT and I'm not sure when they will stop it. His ability to speak gets frustrating @...
I have been to two speech therapists and they feel, as well as my neurologist, that my problem stems from my diaphragm's inability to engage thoroughly, not my...
Yes when my Love gets angry he is LOUD! When he sAys Whatsup to guy friends he is able to find the base octave. Otherwise his voice is very quiet. Sent from my...
I dont see a name, so....no, speech therapy over early on. I found they were just quessing on therapy. Eventually progressed (healing)to what I am left...
Yes, Mike, keep talking to us. More importantly, don't cloister yourself from the world. The world has amazing things. I am constantly impressed and...
I found out that I had HIV in June 2008. On the 2nd of January I was admitted to hospital, and after tests over a two-week period, I was diagnosed with PML. I ...
... Remember: many of the Drs. treating PML/HIV dont know anything about PML. I now question everything. At one time my daily pill ritual was 28. 2 had...
Nightmares and paranoia. Did you experience this? My Love did not start experience them until his regiment changed and the lesions started to stabilize. He...
Your psych is correct. What is affected is dependant on the area of the brain where the lesions lay. I sit here on this list and listen to what everyone else...
Hi everyone. My partner has managed to pull through his recent problems with his plunging blood pressure. His CD4 was 26 in April (when he started the drugs),...
Hi Avery, I'm glad that you found this group, if anything what you read is very uplifting. I had a little stint at the beginning (crisis period) that I was in...
