1. P

    Radicava results

    This thread was closed after one month. I don't know why but I'm sure there's a good reason?? There was very little results on this thread, as i expected. Radicava good news is hard to find. There's a lot of profiteers pushing this..........ALS Association news has this drugs add's on there news...
  2. I

    Generic for Neudexta?

    Three months ago I began taking Neudexta to stop crying at the drop of a hat. At that time, my copay was $120 for a 90 day supply. I tried to refill it today. The copay has increased to more than $1000! With all the other drugs I need to take, I can’t afford to pay that amount for one pill...
  3. A

    It's been a journey and i'm suspicious

    Hi everyone My name is Alan Rodriguez,I'm 26 years old, I'm Mexican and currently living in the country's capital. I've read the obligatory post to read before creating a thread, i do this to know your opinion and to be heard more than for my peace of mind, i hope I'm not breaking any rules...
  4. Clearwater AL

    Life isn't fair...

    Rules… Rule Number 1. Life isn’t fair. Rule number 2. No one can change Rule Number One. Rule number 3. Improvise, adapt and accept. (The best you can). What brought this to my mind was I watched a Rolling Stones concert… “The Stones… Over Havana Moon. These guys now are all in their 70s...
  5. KimT

    Aciphex no longer available

    I've been taking Aciphex for 20 years. About five years ago, none of the insurance companies would pay for it and I started buying it for cash in Canada through their wonderful online pharmacy. The pharmacists there were wonderful and send me e-mail reminders when my prescription was due...
  6. MJALSWarrior

    Right to Try

    Has anyone seen anything to indicate whether the VA is going to recognize the Right to Try and allow us to try Nurown or other promising drugs under development?
  7. jethro

    Dizziness and ALS

    i came to doctor because of dizziness which started 20 years ago and it reached culmination when i visited neurologyst in 2015. he looked me and sent to psychiatryst (suspicious BIP after dialogue). visited another one looking for second thought, he also sent me to psychiatrist. i did all the...
  8. A

    made hospice decision

    my earlier thread on this has closed since it's taken me so long to decide. Maybe a mod can link to it. yesterday I decided it was best for my family to start hospice. My husband is realy struggling with this end stage, and I am hoping hospice support can help him get through this. I get to...
  9. I

    Nuedexta through a PEG?

    For the second time, I have received a drug sent in a capsule when I can only take drugs through the PEG. This one is for Neudexta. My husband called the mail order pharmacy and after 30 minutes on the phone he was told that Neudexta only comes in a capsule and that I should contact my doctor...
  10. M

    Too late for trials?

    My mom was diagnosed in February 2018 with advanced ALS. She hasn't lost the ability to speak, move, eat or drink but is on oxygen and has hospice. Is it too late for any type of treatment or clinical trials/drugs?