nih

  1. S

    Going to NIH for research study

    Hi all, As my title suggests, I am headed to the NIH (National Institute of Health) on Monday to take part in a research study on inherited neurodegenerative disorders. My current diagnosis is hereditary spastic paraplegia, but I have no family history of it and my symptoms don't really...
  2. Mtzu

    Tudca?

    I'm wondering if anyone here has heard of taking Tudca to help slow progression. It was mentioned to me by someone who works with Augie's Quest. She told me that she heard about it from one of the people working at ALS TDI. I've asked for additional information. This is a link to a study I...
  3. S

    Whey Protein+BCAA's

    Hi all, First, I would like to send peace and love out to those of you coping with ALS. Personally, my uncle has been affected with motor neuron disease (currently has aspiration pneumonia). I am happy so many have been made aware of ALS/MND through the "Ice Bucket Challenge," even if not all...
  4. L

    3 years since PLS diagnosis

    Here’s where I am at 3 years with my PLS: • 2009 o Started in left leg, then right (foot drag, falls) • 2011 – June – Diagnosed • 2012 o Started using a cane o Hands next –weakness and fist clenching at night – wear braces for this o Emotional lability (laughing and crying episodes) o...
  5. MaxEidswick

    Antisense RNA (asRNA)

    From my daughter Jenny ... ----- Antisense drugs are being researched to treat a variety of diseases[2][3] such as cancers (including lung cancer, colorectal carcinoma, pancreatic carcinoma, malignant glioma and malignant melanoma), diabetes, Amyotrophic lateral sclerosis (ALS), Duchenne...
  6. A

    Radiation therapy normalizes life-threading saliva

    I found the following article in a German forum and translated it , however, maybe not perfect! Diseases of the central and peripheral nervous systems such as amyotrophic lateral sclerosis (ALS ) may lead to a strong flow of saliva , which often leads to swallowing and bring saliva into the...
  7. Nikki J

    PLS study at NIH

    Is anyone here in it? It is observational so no intervention. See it has been ongoing for years but still recruiting. It looks like the physician is Mary Kay Floeter who specializes in PLS. I am in a NIH genetic ALS study. If it is run the same way they pay your travel,hotel and give you...
  8. shelleynshaggy

    My strength is crumbling FAST...

    Feeling down - I am so angry with EVERYTHING! I feel so bad - Jim is having a hard time and I feel angry with him. He is saying he is having problems opening and closing his eyes (okay not angry on that one.) He is back to getting up several times a night - but having problems getting in and...
  9. B

    EMG testing soon

    Hi - I've read much of the forum (and all the stickies) and am so impressed with the quality of information and compassion shown here. It feels like a real community. I'm here because I'm going in for EMG/nerve conduction testing on May 10. This is after 9 months of testing and worsening...
  10. Inventor

    Montreal researchers discover new treatment possibilities for ALS

    A team led by Dr. Alex Parker, a professor of pathology and cellular biology and a researcher at the University of Montreal Hospital Research Centre (CRCHUM), has identified an important therapeutic target for alleviating the symptoms of Lou Gehrig's disease, also known as amyotrophic lateral...
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