research

  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. C

    Muscle fatigue/weakness, fasciculations

    I want to share my story. I have seen many doctors in many specialties (including many neurologists), and nobody can help me. I'd like to ask (1) if this sounds like ALS, (2) if this sounds like another motor neuron disease of any kind, or (3) what else it could be and where else I might look...
  3. 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...
  4. V

    Husband is a possible carrier of c9 gene - anxiety over symptoms.

    Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
  5. swalker

    Lithium Battery for Magic Mobility X4

    I am not sure where to put this, so will put it here. Mods, please feel free to move this to a more appropriate forum. As some of you probably read in the PALS checkin post, last Sunday we installed a home-built lithium battery pack in my Magic Mobility X4. I will provide some details in this...
  6. M

    What happened before the ALS diagnosis

    Hi, for start I'm sorry for my bad english. I writing for my sick brother and want to know what can cause ALS. I would like to know if there is any research of how people lived and what kind of medication they took before getting the symtoms and later ALS diagnosis. Short history of my little...
  7. T

    Familial ALS continued

    Hello- For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two? We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
  8. KarenNWendyn

    Biology research project

    There was a biology student who was studying equilibrium in sea birds with a specific focus on terns. He proposed that giving measured doses of THC (from, of course, marijuana) and observing their flight patterns would give some insight to the problems of equilibrium in three dimensional space...
  9. affected

    aussie research leaps

    Some of you know of Neale Daniher who is a bulbar onset PALS and started the Big Freeze to raise awareness and money to fight MND. This is what is happening with the money at the moment...
  10. B

    C9 carrier with possible symptoms

    Hello everyone! This ended up being a very long post so I I'm going to put a tldr at the end for those of you with limited energy. This is my first post here and as a c9 carrier I will likely be lurking around for a while as it is the most comfort I have found so far. I want to say thank you...
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