>Max to answer your question the Houston clinic is
my experience too
>hey were very thorough with blood tests-I gave enough for a donatation
I think they fund the clinic with our blood -- 14 vials last time!
>they did real breathing studies with a real pulmonologist both sitting and lying down. Incidentally, my numbers in Houston were in the mid 70s while in Austin they were in the high 50s. They noted a great deal of muscle wastage on my left side.
Holland & co., are pretty serious. 70's are good
>They also did mechanical studies to see how my hands were affected
yeah, I hate these tests. Sandy keeps a worksheet of my results
>In short, anyone really interested in the best care would take the 3 hr drive from Austin to Houston. Thats what we are doing from now on.
>Dr Simpson is very impressive, and
Ericka is Stanley's heir apparent

-- hard to live up to the best!
>the clinicians there think they have the first really effective drug in trials now. The MS drug Giieyna was said to markedly slow down ALS progression in the trials they are doing. They say they are having trouble getting the FDA to approve the drug for ALS which is too bad considering Novartis charges 5-6000 month for 28 pills and insurance wont pay off label. In the meantime, if you can get a dr to give you an ms diagnosis, you would be ahead of the game.
yup, been known for about 3 years, but ffda blocks us. may have a va in, will update!