Recent content by jpsteeler99

  1. J

    Tobii I15 w/ Gaze For Sale

    this forum will not let me PM;/ please contact me [email protected]
  2. J

    help me moderators

    Would it be that hard to respond to my inquiry instead of just slapping it up on the forum?
  3. J

    help me moderators

    All my posts go to moderation even if they don't contain triggers. Also, I get the following message when I access profiles..... jpsteeler99, you do not have permission to access this page. This could be due to one of several reasons: Your user account may not have sufficient privileges to...
  4. J

    THC/medical marijuana for ALS?

    Paranoia only happens because you think you are doing something illegal. I smoke on a regular basis but have to be careful because it will loosen up spasticity, which in my case, makes my legs weaker. It is legal in NJ but they only have one dispensary so they are backed up 6 months taking on...
  5. J

    Baghdad Stem Cells

    REALLY? The alternative is death, not doing it is an even bigger risk.
  6. J


    You keep thinking like that and this thing will never be solved. We have to self medicate, use drugs off label and experiment ourselves. If we wait for researchers then this generation of PALS will be dead by the time they find something. What do you have to lose if it doesn't work...
  7. J

    Getting Dressed

    that's what they call sneakers in the South, tennis shoes.
  8. J


    Nothing can really be done.
  9. J

    Can't keep my legs still ..

    I smoke Marijuana right before bed to keep my legs comfortable while sleeping. I am lucky enough to live in a state that has legalized medical marijuana(NJ). It can also be eaten or put into a PEG if you can't smoke.
  10. J

    Engineered stem cell advance...

    Acthar appears to be an MS treatment already.
  11. J

    Your user name, what does it mean?

    Mine is my initials plus my favorite football team, GO STEELERS! I put 99 on the end while searching for an AOL handle back in the mid 90s when I got my first PC. I have been jpsteeler99 ever since. I have two wonderful companions that keep me company while the wife is at work and the kids are...
  12. J

    Propofol reverses symptoms

    Don't waste your time. He will just tell you that there is no scientific proof so he will not recommend it. My neuro will not discuss anything beyond approved drugs and treatments.
  13. J

    May I ask about your fasiculations?

    Absolutely not true, my fasciculation started long before my weakness started and they continue just as strong now that the weakness & atrophy have kicked in. I fasciculate head to toe 24/7 now. You can't really feel the fasciculation but you can see the skin crawling. Twitching on the other...
  14. J

    Tirasemtive / CK-2017357 Feedback

    You are contradicting yourself. I would think improved muscle strength would mean better. Maybe you meant it would not reverse symptoms which I think most people understand. I go for my last visit this week. I had no improvements during the trial. My legs got weaker but everything else stayed...
  15. J

    Rilutek cost

    I get it for free but I refuse to take it and line the pockets of the greedy.