1. NotALS!

    Diagnosis changed from ALS to MG

    Three years ago, I was diagnosed with ALS, early onset, at Yale New Haven Hospital. I was 49. The neurologist immediately said "don't try antibiotics, they don't work and they just make you sick". He gave me a prescription for Rilutek and sent me home to die. My husband and I immediately began...
  2. NotALS!

    back to the als diagnosed, again!

    Ok, this is really getting ridiculous. I've had lyme symptoms for 10 years but never tested positive for anything. In 2009, my shoulder became weak and atrophied. The first neuro didn't give me any explantion but asked me back in a year. A year later, the atrophy had spread to my other shoulder...
  3. P

    Going through the motions

    Hi everyone,been a year since I posted .Had the heavy metal test,came back high , 90% ,in lead ,cadmium,50%mercury,nickel,uranium, Volatile solvents were high as well,95%tile Benzene,Ethylbenzene,Toluene,Styrene,and then the NonDioxin like Polychlorinated Biphenyls,74,138,153,180.Been doing...
  4. L

    It was placebo

    Just got our results on the Ceftriaxone trial That my hubby participated in. He was on the placebo. that was what we suspected. Cytokinitcs trial starting in Jan in Indy. We are planning to jump on that one as soon as we can get an appt.
  5. S

    New Here - Hoping to help and get help

    Hello everyone, This is my first time posting and I'm hoping to get a little insight from more experienced people and share some of my own insights for those who are having symptoms and are undiagnosed. I've spent this entire year researching and in doctor's visits and am a medical...
  6. M

    new ALS drug trial recently announced: Tirasemtiv

    Study of Safety, Tolerability & Efficacy of CK-2017357 in Amyotrophic Lateral Sclerosis (ALS) - Full Text View - ClinicalTrials.gov What are the current thoughts on NP 001 and Dexpramipexole? The story on Ceftriaxone is the drug is an ALS dud (but the paper work is not in one it yet).
  7. J

    ALS Diagnosis 12 years ago

    Sharing from a friend with a link to a post on my blog about him Dear Joanne would you please translate this to English? Its a column to have been underwritten wooden i will send to ILADS guys! borreliasyk I've been in 12 years. Like many others, I have not been believed that the Norwegian...
  8. L

    ceftriaxone trial stopping

    Just got the word from our neuro in Indianapolis. Ceftriaxone trial is being stopped. Not meeting criteria ect, ect. We will set appt to have final study visit and hickman cathater removed in the same appointment. Almost two years down the tubes. Still don't know if real stuff or placebo...
  9. L

    Still on ceftriaxone?

    The ceftriaxone trial seems to have dropped off the radar these days. My husband has been on this trial for 20 months now. continues to weaken slowly. Got a scooter the other day, being fitted for a power chair now. Anyone on this trial notice any improvements? My husband convinced he is on...
  10. G

    Ivermectin for non-familial ALS?

    Hi all, this is my first post and sorry if I ramble a bit. This will also be quite long because I want to make sure you get all the information I have. And obviously it would be nice for people to continue their own research and add to the knowledge-base! I have a family member diagnosed with...