1. J

    Now, after all, can I bring my cause of ALS?

    hi, since i am diagnosed, i sit at home, go to gym/spa, like i used to do in past 20 years learning about als, read pubmed, alsuntangled... i am not eligible for nurown trial. i am not usa/canada resident, im 50 y old, 210 pounds weight for last 10 years (i felt and i had left elbow luxation...
  2. B

    Rilutek 50mg

    Hi My sister is diagnosed with MND and recently moved back to my parents in Malaysia. The cost of buying Rilutek is £400 for 56 tablets, which is very expensive and she had stopped taking due to cost. Is someone here paying privately for their medication? If so, how much? Is there a way...
  3. J

    Entering 4th year of ALS - my status, pleace advice

    in a 750000 citizens capital of my country, i found just one guy (early twenties) who has ALS. he was in china, hardly speaking and moving etc so i dont have base to compare with him. there are at least more than 15 people having ALS in my town, but for sure they dont use internet. as i said...
  4. D

    Radicava YES or No

    I need other PALS advice. I've had 1st and 2nd infusion. Is this worth the port or is this drug not worth the time like Rilutek.
  5. F

    rilutek/riluzole supply chain

    both the Atlanta va pharmacy and express scripts(Tricare program) have rilutek/riluzole on backorder. anyone else having the problem ? ? appears strange that both pharmacies would have the meds on backorder.
  6. wishmobbing

    C9orf72 and Riluzol

    My boyfriend's mutation has been identified as C9orf72, He's on Rilutek but progression is quick. Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS. There it said, that Riluzol doesn't seem to help the familial kinds of...
  7. J

    Using HGH instead of rilutek

    hello, i read some experts MEDICAL examinations which tell that nothing happened combining rilutek and hgh. that is the point. i dont want to use one way ticket called rilutek/riluzol, but i will use hgh only. nothing to lose. als diagnosed 09/17. hardly walk is the only problem by now. emng...
  8. worrieddaughter77

    Questions to doctors during second ALS clinic visit.

    My dad has been diagnosed with "MND likely ALS " a month ago in North Western University hospital in Chicago. In 4 days we are going to his second ALS clinic visit. During our last visit, i was too overwhelmed and unprepared to ask questions, but i want to make sure i am all of the important...
  9. Lkaibel


    My husband has been approved for a trial of AM0035. Radicava and Rilutek can be used during the trial. It has just now this week received Orphan Drug status. My husband called because he googled Trials. Has anyone else heard of this?
  10. R

    Riluzole (Rilutek) Who is taking

    I have been prescribed Riluzole for my ALS diagnosed 7/2017 but have not filled due to cost and side effects. What is your opinion of taking this drug. Are others taking? Do they have any side effects?