1. B

    over 6 months of symptoms no answer

    First i would like to thank everyone in this forum for providing there experiance and knowledge, and i hope for a cure soon. would also like to state that i have never had HA and my symptoms did not start with twitching. I won't make this a novel so here goes. Sept. Mild fatigue and felt i...
  2. T

    Sinking - got a lifeline?

    Hi everyone. I apologize in advance for the length of this post. I’ve only been a registered user for less than 24 hours but am really impressed with the empathy and knowledge of posters and moderators. What a fantastic resource. I am on this site to not only utilize the nuts and bolts of...
  3. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  4. D


    My understanding of Neudexta is that the dextromethorphan is what helps PBA. If dextromethorphan is the active ingredient in Neudexta, and quinidine is only there to slow the metabolism of the DM, shouldn't any sustained release form of DM be helpful? Quinidine interacts with other meds that can...
  5. 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...
  6. D

    Does this sound like ALS? Is this a helpful EMG?

    Hi! First of all I'd like to thank you all for accepting me, and also I'd like to acknowledge all of you as true warriors. Helping others while you're getting through all the stuff you have to live, is truly remarkable. May God bless all of you. I hope you could help me out. I'm a 25 y.o. male...
  7. A

    Need Advice

    Thank you the helpful saints of here who tried to help people from all over the world. I have read not only stickies but may be all the threads of this section. Yes I have full of anxiety and try to struggle against it but I am not able not manage it yet. September of last year I had headache...
  8. S

    Update Hi everyone and thank you very very very much for your helpful information. Let me start by saying that I went to a neurologist (who specializes in EMG) and he did an EMG on me. He said everything looks better than...
  9. B

    Concerned about ALS

    (Sorry i first posted it by error in the general feed) Hello everyone, first of all thank you for everyone contributing to this forum because I find it quite helpful to read about individual experiences. I am writing here as I have been experiencing different health problems for a while...
  10. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...

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