1. Colleen15

    Riluzole what times do you

    What times do you take Riluzole? Because of the fasting before and fasting after, I take it at 4:30 am and 4:30 pm, but i Have trouble falling back asleep after the 4:30 am. Thank you.
  2. Colleen15


    Can Riluzole tablets be crushed? Thank you.
  3. Tomswife

    Riluzole and side effects

    My PALS, Tom, started Riluzole in August 2022 at the time of his dx. He has been declining each month. In February he was barely conscious, weak and drowsy all the time. I thought I would lose him fairly soon. I called the neurologist to discuss stopping the Riluzole. Are we getting only...
  4. lisa g

    I would like to introduce myself

    My name is Lisa and I was diagnosed 1 week ago with ALS. My neurologist is such a compassionate person, she cried with me while giving me the diagnosis . Her and her husband are a neurologist team. While they suspected ALS the EMG confirmed it. I would like to say that they were fantastic with...
  5. Jamesgol

    RILUZOLE and fatigue.

    I have been taking riluzole for about six weeks. During this 6 weeks, I have been more fatigued than I ever was in the past. Is it possible the riluzole is causing the fatigue.?
  6. S

    We are stuck and need advice

    I have had 2 accidents now and I just dont understand how it's not ALS related. Both now I have been in the bathroom on time but as soon as I see the toilet I cant hold it anymore and it all comes out. Is this normal? Plus my hair is so greasy and my hair on my head and eyelashes are getting...
  7. N

    Greetings to All

    Hello Everyone, I've been all over the website now for a while and have read a wealth of information that I have found useful as I negotiate my journey . So a big Thank You to all of the contributors that have taken the time post . Your experiences and knowledge have already helped me as I...
  8. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
  9. E

    Riluzole and Weakness

    My father has started taking Riluzole for PLS. He has noticed increased weakness (for instance, he used to be able to stand up easily and now he has a lot of trouble standing alone from the couch). Is this normal? Do you think it might be a result of the disease? It started quite abruptly since...
  10. E

    My story

    Hello, I want to share with you our story in full. There are bits and pieces all over the forum, but I wanted to gather everything together. My father received a final diagnosis of MND yesterday. My father (60) started experiencing symptoms quite a while ago, around the winter of 2016. He...