riluzole

  1. G

    After months of lurking, I'm officially here

    I've been lurking here for about 6 months, mostly to be able to say, "oh good, that doesn't sound like me!" But, as of September 24th, I became an "official PALS". Not a club I wanted to be part of. My symptoms started with excessive yawning, and the inability to sing. Like I sang a solo on...
    • Grandma D
    • Thread
    • ability atrophy back baclofen bed bulbar clinic emg finger hope knee pain muscle muscle wasting pain riluzole slurred speech speech supplement swallowing symptoms tongue tongue atrophy wanted weakness
    • Replies: 11
    • Forum: Newly diagnosed
  2. A

    Finally a formal diagnosis

    Now nothing is left to speculation. Formally diagnosed at India's best neurological institute NIMHANS...FAMILIAL AND. Do not know what to do next...I have two small kids 11 and 6 year old...as per the docs there riluzole does not help in familial cases n there is nothing that docs can do...
    • Anjum nazir
    • Thread
    • death diagnosed diagnosis familial fatigue kids riluzole twitches
    • Replies: 17
    • Forum: Newly diagnosed
  3. H

    Help on Trach

    Hi , my name is Jennifer and my mom is diagnosed as ALS last year(8/2017). Recently, her pulmonary doctor recommended my mom for the trach due to using 24 hours of trilogy. i am also researching about it but couldnt find the answer or opinion that that my mom has after she gets trach (Note: She...
    • Hjlee
    • Thread
    • als diagnosed feeding feeding tube fingers food hours lift movement power power wheelchair questions riluzole surgery trach trilogy wheelchair
    • Replies: 3
    • Forum: General discussion about ALS/MND
  4. lgelb

    Thick liquid riluzole has US launch next month

    TIGLUTIK is planned as a mid-October launch in the US. It is already available in the UK and some other countries. Depending on who supplies your riluzole, you might want to start asking about it now if you're interested. It can be used by mouth, or with a PEG with a water flush.
  5. Nikki J

    RNS60 trial enrolling

    https://clinicaltrials.gov/ct2/show/NCT03456882?term=RNS+60&rank=1 The criteria are tight and it requires weekly visits. If you happen to meet the criteria and live close you might want to look into it. Recent symptoms onset 6-24 mos, must take Riluzole and must be pretty independent yet have...
  6. J

    Mother Diagnosed

    Hi everyone, My mother has been diagnosed with ALS 2 weeks ago. she is having a bulbar onset right now having a hard time swallowing, talking and eating. Her Neurologist told me her breathing is good and has a relatively slow progression. She is on Riluzole right now, seems like the progression...
    • Jesse35
    • Thread
    • als breathing brother bulbar bulbar onset diagnose diagnosed eating family neurologist onset problem progression reading riluzole slow progression support swallowing work
    • Replies: 7
    • Forum: Newly diagnosed
  7. B

    Newly diagnosed

    Hello everyone, After having received a diagnosis of PLS 7 months ago, my doctor changed the diagnosis to ALS 2 weeks ago based on lower motor neuron symptoms. I've been on riluzole for 3 months, and just signed the paperwork to start radicava. My mind is definitely spinning at the moment, so I...
    • bostongrl
    • Thread
    • als diagnose diagnosed diagnosis motor neuron symptoms newly diagnosed pls questions radicava riluzole symptoms wanted
    • Replies: 8
    • Forum: Newly diagnosed
  8. Doglady

    New-ish Diagnosis

    Hi- I’m new here and was diagnosed 4 months ago. My symptoms started a year earlier! Started with falls then foot drop. Also cramps and fasiculations. It was terrible at first but I’m adjusting now. My ALS clinic is great and the local ALS Association couldn’t be more helpful. I’m on Riluzole...
    • Doglady
    • Thread
    • afo bipap clinic cramps diagnosed diagnosis foot foot drop helpful new here night riluzole symptoms walker
    • Replies: 12
    • Forum: Newly diagnosed
  9. C

    Newbe.

    Hi All. Very new to all this. Symptoms started about 7 months ago. After 4 Dr.s and 3 states they confirmed what I suspected from the beginning. ALS. Got to say it's harder on the people around me than it is me. Got a few questions. 1. What legal forms do I need to prepare while I still can...
    • captaingary
    • Thread
    • als clinical clinical study cost family hope insurance medicare questions riluzole symptoms
    • Replies: 13
    • Forum: New members
  10. C

    Please share your experience at ALS clinic - very frustrated!

    Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago. During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise...
    • Cherise77
    • Thread
    • advice als als clinic clinic confused crying cure dad eating edaravone frustrated hope neurologist problem progression questions riluzole supplements symptoms treatments vent vitamins
    • Replies: 13
    • Forum: Newly diagnosed
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