6 months ago today I received my diagnosis...

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mbmurray

Distinguished member
Joined
Jan 10, 2013
Messages
117
Reason
PALS
Diagnosis
01/2013
Country
US
State
VA
City
NOVA
I guess all things being considered I am doing pretty well...

  • Entered and completed Tirasemtiv drug trial
  • Physically still in relatively good shape (right arm/shoulder continues to deteriorate), but no other noticeable decline in other body parts since Jan
  • Setup vacations with family (Alaska cruise, Disney World, Las Vegas/Grand Canyon TBD)
  • Receiving support from family and friends
  • Still working FT!
  • Only thing I am debating now is whether to start on Rilutek (generic brand :))
 
If insurance pays for the generic, try it. I don't know much about the side effects or inter reactions with other drugs or food..
 
if rilutek is so good why do you consider taking it only because you have insurance. I realize without insurance it is cost prohibitive but if I thought it was effective I would mortgage the house.
 
Rilutek= drug companies taking advantage of ALS patients. I wouldn't take Rilutek if it was free.
No offense to you mbmurray.
 
My dad had insurance that covered it and took if for awhile. He didn't see any benefits from it so he discontinued it. I heard it can do alot of damage to the liver.
 
That is why I am saying I am debating taking Rilutek. I have been told by my neurologist that it can reduce muscle strength by 10-15% when first starting, as well as pummel the liver (but they can do blood tests to monitor). On my first visit, she actually wasn't pushing me to go on it and still isn't.

As it appears I have slower progression, I don't feel that I need to rush into taking it, but exploring it.

I am still working FT, so I have insurance and my out of pocket expense can not exceed $100 for any drug per month, so cost isn't an issue for me.
 
@mbmurray:

Glad to know that after 6 months, you've progressed relatively slowly.
I hope you symptoms stay at that slow rate of progression.
Who knows if you keep hanging there long enough, a cure for this disease might be around the corner by then.


Carlos
 
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