1. C

    Mood changes

    Hi all, This is sort of an update post (last post was in the Newly Diagnosed) but I wanted to move my thread to a maybe more appropriate category. My husband has gotten a second opinion from the chief neurologist at the University of Münster in Germany, where he is from. He was also able to...
  2. K


    Hi there. My dad was diagnosed this past March and is on rilutek as well as he is taking edaravone. I am interested in where I can get rch4. I live in Toronto, Ontario, Canada Thanks for all your help Karen
  3. K

    Similar stories

    Hi everyone, thanks for taking the time to read. I posted a couple weeks ago about my mom who is progressing rapidly. She is continuing to progress after her diagnosis on August 24. Most of her words are not audible now and she is getting weaker with transfers from bed to chair etc and is...
  4. jethro

    Therapy with ibudilast - failed

    just to inform forum that i was hardly waiting for a new als prolonger, paid reasonable, didnt pass the customs, so all my ships - sinked. they showed me ibudilast on customs. opened the box, saw all vials and powder, kiss godbye. intented to be as a add-on to rilutek. it is returned to sender...
  5. jethro

    Detoxi(fi)cation with green ventilated clay

    hello, many people tried many things to slow down als. i wonder - did anybody triy detoxication with green ventilated clay for oral use through 3 weeks? i'm on rilutek for one month (started on july 1st) and i obviously have to pause it, cause clay (hidratized alumosilicate) and rilutek goes...
  6. N

    Dad has ALS

    HELLO every one i want to thank every one who take his time and read this . my name is Najib I'm 28 years from morocco "north Africa" . we found recently that my father has ALS after a year of suffering between doctors and tests . you cant imaging how devastating was that to me and to my family...
  7. jethro

    Newbie with Rilutek

    yes, you read it right! its app 3,5 years after onset and 10 months after diagnose. my ALSFRS-R is 39, neuro count in on 29.6. he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw. now is 18th day of using rilutek. after 15 days i...
  8. jethro

    Difference in "laboratory research only" products and products for comercial use

    Difference in "laboratory research only" products and products for comercial use since i am "not eligible" even to live, i guess that I AM eligible to chose how to die and how to spend my money. trial is on: ibudilast as a add-on to rilutek, double-blind, blahblah... decided to do it my way...
  9. I

    rilutek - stomach, throat, skin

    I've read through several posts here about Rilutek. Just adding my experience. Been on it for over a year. I have had stomach bloating for many years. The Rilutek has seemed to make this worse. Experience what feels like an obstruction in my lower throat... just annoying really. Have...
  10. jethro

    Feasibility study for new drug

    let's say there are 5 PALS@100000. statistic data say less (2--3@100000), but there are many poor, old, sick from other diseases etc. it means that there are on earth max 500000 pals (according to official data 100-200000). 90% cannot afford themselves drug which is permanent and cost (lets...