PML

[1992chair]

Progressive multi focal leukoencephalopathy or pml I got the news over the phone. What did I expect I had gone off meds for years. never been sick
For some reason I thought that I was different.i told myself that I was different that I was the rare case.  I had to move back home. I lost my voice which I put off to a tooth infection. Whatever I needed to think. My dominant hand became impossible to use and so I switched to the otheri keptmaking excuses to not go in.. Then finally walking was taken Away and I finally went to the e.r.i got back on track after that.
I wonder why I am alive at times knowing that this diagnostic was grim for others
I have since vowed to never miss another dose my VLis UD now it’s the healing.i get around by myself and my speech is still off but better . My question is do you know anyone that’s come back from pml?

[Jim Allen]

Hiya

Welcome to the forum. Sorry to hear about the struggles and the PML diagnosis, sounds very rough and wishing you all the best. Hopefully someone will chime in with some information or words of wisdom on that front.

How long have you had the PML diagnosis if I may ask?

I have since vowed to never miss another dose my VLis UD now it’s the healing

Glad to hear you are back on treatment and UD

Take it easy

Jim

- BTW I moved you post into "Living with HIV" as the "Research News & Studies" is aimed at sharing news.

[Jim Allen]

I did a quick forum search on PLM, seems like we have had some members.
This post stood out from a member in 2006 who setup a yahoo group support group.

https://forums.poz.com/index.php?topic=1297.msg

Hi! My name is Ron and I am living with HIV and PML. Myself and a fellow PML survivor wanted to test the viability and usefulness of an email support group for others affected by PML. Therefore I have started a Yahoo Group to facilitate this idea. I personally will be posting more details of my own struggle with this illness and invite others to do the same on the site. It seems little is still known of this affliction, so at best this could lead to new ways of seeking treatment for some and at least a forum for finding inspiration and venting frustrations for others.  It has been personally frustrating and isolating for me not being able to efficiently find others with stories to share regarding their experience with PML. I thought it might be helpful to initiate an informal group to alleviate some of this frustration. I ask that you take a moment to join this group TODAY! Please be kind and share anything that you feel willing to share, be it about affective medical treatments, recovery successes, relationship struggles, rejection, finding employment, whatever! Your story just may prove invaluable to another. I am going to post this invite here and on THEBODY.COM, but PLEASE do your own soliciting so that this can grow. Thanks very much for your time!

http://health.groups.yahoo.com/group/PMLSurvivors/

Related Link:     http://www.ninds.nih.gov/disorders/pml/pml.htm
Post message:     PMLSurvivors@yahoogroups.com
Subscribe:     PMLSurvivors-subscribe@yahoogroups.com
Unsubscribe:     PMLSurvivors-unsubscribe@yahoogroups.com
List owner:     PMLSurvivors-owner@yahoogroups.com

I think the sightly updated landing page for this group is:

https://groups.yahoo.com/neo/groups/PMLSurvivors/info?fbclid=IwAR0AaPPpicHlSOcLVfbgEwnHvq7nZVeA3JsiLpsaWMCfirU_bhSai1PNNMo

They also now have two FB pages

Most up-to-date is a closed group, last updated within the past month it seems :

We also have an alternative FB page, where after joining, you can chat with other survivors
PML Survivors Exchange
https://www.facebook.com/groups/1757934231158674/

And this one:
https://www.facebook.com/PML-Survivors-Progressive-Multifocal-Leukoencephalopathy-576308552517259/

Hope this helps

Jim

[1992chair]

Thank you I will be sure to check those out I was diagnosed over the summer and was at the point I couldn’t stand up without falling over.now I can get around and my balance has gotten a lot better. Still no running yet or lifting heavy materials. This is the similar thing I ran into .the worst is that it was completely avoidable I heard a teen said he was leaving care through the walls of my last appointment and I wanted to kick down the door and show him what could happen. Everything that is online  was outdated and the most recent was about ‘08. All the studies posted have grim numbers on mortality rates.

[Jim Allen]

Hiya

Well I'm glad you have had some improvement since the summer, sounds like it was really rough time.  I knew that PML was considered a progressive illness, but have to admit I do know not much more or anything up-to-date on the topic either.
 
I do hope the people in the support group have more relevant or helpful information, but do keep us posted how you are getting on here.

Best, Jim