nih

  1. S

    Emergency situation and treatment given (Hydrocortisone). Opinions requested.

    Our mother is totally paralysed with just eye movement is on trilogy ventilator and we are managing her at Home since December2010 .she do not require any oxygen support (able to maintain 96-98 o2 levels on own) unless there is some infection. Last week she went into serious condition ...
  2. G

    Research on protein misfolding

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328956/
  3. A

    Hydroxytyrosol effectiveness? With Other Supplements?

    Hydroxytyrosol is a phenylethanoid, a type of phenolic phytochemical with antioxidant properties in vitro. In nature, hydroxytyrosol is found in olive leaf and olive oil, in the form of its elenolic acid ester oleuropein and, especially after degradation, in its plain form(***wiki)...
  4. N

    Starting Tirasemtiv Trial

    Hi. Just wanted to let you know that my husband will be starting the Tirasemtiv trial next Monday. The first 2 weeks are open label. I will keep everyone updated on how he does. We are also going to NIH on July 27th to volunteer for the HERV-K. Natural History Study. He will be donating...
  5. KimT

    Respiratory Therapy effective in PALS

    Pulmonary Physical Therapy Techniques to Enhance Survival in Amyotrophic Lateral Sclerosis: A Systematic Review. - PubMed - NCBI
  6. S

    Back to the NIH

    Hi all, Well, as my title suggests, I'm headed back to the National Institutes of Health tomorrow in Washington, DC. As many of you know, I was originally diagnosed with the upper motor neuron disorder, hereditary spastic paraplegia, but a change in symptoms, no family history, and ambiguous...
  7. Buckhorn

    Np001

    These are the most recent articles I could find about the status of this drug trial: Randomized phase 2 trial of NP001?a novel immune regulator: Safety and early efficacy in ALS Published Phase 2 Results Demonstrate Neuraltus Pharmaceuticals? NP001 Potential Efficacy and April 4, 2016 ...
  8. Nikki J

    Excellent review article on C9

    Well worth reading if you are C9 The Spectrum of C9orf72-mediated Neurodegeneration and Amyotrophic Lateral Sclerosis
  9. S

    In Michigan for opinion number ... six?

    Hi all, As I've mentioned here before, I've been trying to pin down a definitive diagnosis for the past two years or so. I was diagnosed with hereditary spastic paraplegia at Houston Methodist, but I don't have a family history or clear genetic evidence. My symptoms have changed a lot...
  10. M

    At NIH, newbie!

    Hi all, My husband John and I are currently laying in a hospital bed at NIH! Our journey started 4 1/2 years ago in the spring/summer of 2011. John grew up on a ranch in West Texas and worked as a geologist in the Oil Fields. He played baseball, football, and wrestled growing up. In 2011 he...
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