Sally, I watched the video; Angela is talking about plasmapherisis (sp ?). Is there another video where she talks about an experimental drug treatment ?
Thanks
Linda

I go for 1yr on Ty MRI tomorrow. I'll add them to my album here in a couple days. By the amount of sensory i've lost past 12 months, brain's gonna look like swiss cheeze. Curious to see how big the north star in my avatar got.

That was the first PML tape, there is also an old tape from 2009 about her doing well at 9mos on TY...then in Oct, 2010 her tape, in the hosp, with PML.

She was just put in John Hopkins last Fri, for experimental treatment and there is no new tape, yet. I'm hoping for a tape showing she is better..please, God.

Another Tysabri PML patient responding to CMX001

http://www.facebook.com/pages/Flower...d=154192398822

CMX001 still investigational – see link below

http://www.chimerix-inc.com/therapeu...ategory/cmx001

Thanks so much for the update on Angela. I hope her improvement continues.

Also thanks for the link on the new anti viral, that seems to be helping her.

So I got MRI'd today, play the cd and they didn't put all the series on disc! Tomorrow I have to go back and have them burn another cd. However what they did put to compare with 2010 MRI shows smaller lesion then last yrs so at the moment, im shocked. I hope I see more on other series tomorrow because im getting off Ty (its a done deal) and if it worked i'll be screwed but worse yet - ive lost so much sensory function since last MRI how could brain and stem look better?
We'll see tomorrow.

I just finish watching the video from Angela and read the facebook update. To be quite honest, right now I am scared to begin Tysabri. I know the risks, but somehow watching a real person going through it, is so different than reading about a possible serious side effect.

I don't know what to do.....

It is known that the number of lesions and their appearance does not often correlate with the symptoms of an MS patient. The trial data for these drugs hang their hat most of the time on these lesion numbers. But the location of the lesions is more important and just a few can cause a lot of problems. Lesions can come and go so how a patient feels and their actual symptoms is a far better indicator of how a particular medication is working.

Harry

Confused by your logic Harry. Lesions may or may not cause problems based on location. Clearly the logic would be fewer lesions would lead to less chance of being in a location the could result in symptoms. Last time I checked, how patients felt was a pretty subjective measure especially in a disease like MS - my daily fluctuations in how I feel, get around are pretty large.

Chris

The copy they made today works. Reading them now, I see the huge one seen in avatar shrunk maybe 1/3, however I see more, and more white edges around parts I have no idea what they're called. When I take the screenshots, I'll post them maybe tomorrow. March 2010 scan - started Ty Dec 2009. Jan 2011 scan's after xx infusions.

The amount of sensory i've lost between scans is terrible.

edit - But if I didn't take Ty or C, i'd be much worse so it surely helped. No shots for a yr at least.

edit again - actually so far it looks like there are fewer lesions 2011 vs 2010. I'm sure i'll find the spot thats worse. At least i hope.