1. S

    Accepted into the NIH's Undiagnosed Program

    Hi all, Some of you know me here, but for those of you who don't, I was diagnosed with the UMN Hereditary Spastic Paraplegia at Houston Methodist back in 2014. At the time, I was in my 30s and experiencing a great deal of stiffness in my legs, difficulty walking, and had started falling. I...
  2. S

    Proof that widespread twitching is related to ALS

    I recently came across this article and I'm freaking out now: Everything I've read on here says that widespread twitching is not indicative of ALS, but this article states otherwise. The worst part is that I had an emg last year that the neuro...
  3. Doglady

    HERV-K suppression study

    Wondering what others may think of the idea of Human Retro Viruses being thought to be a cause of ALS and use of HIV drugs to treat PALS? Info on the study: The clinical...
  4. Tedstehr

    B12 Injections

    Hi all! I have been busy renovating my daughter’s newly purchased apartment (in a strictly advisory role) and haven’t been posting much. But I would like to draw your attention to positive results I have had injecting B12 daily. I bought some insulin needles and I inject once a day or so. I am...
  5. N

    Mucus help

    I was searching for something to help with mucus and secretions and ran across this. I wanted to try it before I posted anything. It works great for me. I used to have three or four seasons every morning to remove mucus within a couple of hours of waking. It would be this horrible wet rattling...
  6. lgelb

    Arimoclomol trial now recruiting

    List of sites here Must be within 18 months of diagnosis, have an FRS of at least 35 and erect SVC% predicted equal to or above 80% at screening, and not use BiPAP more than 2 hours while awake. The trial recruitment page is not as clear as the NIH entry on those criteria.
  7. jethro

    Did Nelda Buss have ALS?

    i guess there are many P"ALS" like this one woman:
  8. M

    new neck brace that looks like it will work

    a neck support that looks like it will work! it was developed and tested under the name sheffield snood, and it is being marketed under the name headup collar. here is some info on it...
  9. G

    Do our bodies detect low O2 or high CO2?

    I thought I knew the answer to this and was about to attack a Wired article (a guy held his breath for 24 minutes!) and thought I'd check first. Well, surprise! This is but one of many articles saying BOTH are detected! And this one, at least, says we're more sensitive to CO2! How Your Body...
  10. mbg1977

    Sativex Medical Marijuana

    has anyone tried Sativex?? Medical Marijuana | ALS Worldwide