information

  1. C

    Please Help with symptoms

    Hey everyone, I’ve been doing lots of research and not getting good information from my doctors - and it’s gotten to a point where I’m getting extremely anxious/scared and just need help and opinions from others. So I suffer from muscle atrophy and weakness in my left side (notably my left...
  2. ShiftKicker

    For Canadians interested in Radicava

    The CADTH (independent advisory body Health Canada consulted with) has published its recommendations on Edaravone use in Canada based on their research and consultations with ALS patients, caregivers and other health professionals. From ALS Canada The report can be found here...
  3. D

    trach questions

    I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members...
  4. T

    "Important information" template?

    Hi all, I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.) I know we should probably have compiled such a thing already given that my...
  5. C

    Update: Abnormal EMG with Twitching

    **Original Thread** https://www.alsforums.com/forum/do-i-have-als-als/43237-abnormal-emg-twitching-any-hope.html Hello All, particularly KarenNWendyn and lgelb and others... Figured I may as well update my above thread regarding mainly twitching, long story short he determined it is Benign...
  6. Doglady

    Study of Urate Elevation in ALS -phase II

    I ‘ve been sent information from my clinic on participation in a study using inosine to increase urate levels and see if it’s tolerated and benefits PALS. If I qualify I think I would be willing to participate. Any one with experience or knowledge have any comments???
  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. J

    Medicare-Can I Apply While on Sick Leave?

    I am a federal employee who recently started using my accumulated sick leave after working for the first two plus years after diagnosis. In my preparations for filing for Medicare/SSDI, I cant tell if I have to wait until I have exhausted my accumulated leave before I apply since I will still...
  9. T

    24/7 twitching in both calves

    Hello, I am a 23 year old male and Ive been having 24/7 muscle twitches on both of my legs ( right leg a bit more than my left). I think it all started 3+ months ago, maybe even longer back but thats when I first noticed them. I feel like since I noticed them and constantly thinking about them...
  10. S

    Update

    https://www.alsforums.com/forum/do-i-have-als-als/43187-really-worried.html 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...
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