progression

  1. G

    My symptoms and their progression

    First of all I would like to thank anyone who will take their time to read my post and maybe provide some information about my symptoms. I have read the sticky post "read before posting" but I still had to post. I know it's long - I just realized it now that I posted a preview. I also hope I...
  2. G

    Question regarding muscle weakness

    Hi everyone I have been reading this forum for a month and I have a question regarding muscle weakness. If ALS is a disease of progressive muscle weakness, why does it happen without notice or feeling prior to total loss of function. Everyone says it is about failing not feeling but can't u...
  3. F

    Pillows or special equipment?

    Hello, I am posting on behalf of my Dad. He was diagnosed in June, rapid progression, and he is already in a nursing home living out his last days. As his muscles have weakened, he is unable to move his neck. Because of that, his head falls down and to the side (the side of his ventilator...
  4. E

    Second EMG

    My father has been suffering from upper motor neuron signs over the past three years, with no apparent lower involvement (clean EMG and still no fasciculations), which led doctors to think of PLS. In a second EMG, the results are indicative of "mononeuritis multiplex or motor radiculopathy", but...
  5. KimT

    Pain

    In February I noticed my right knee started to hurt after exercising in pool. Just sitting on a noodle and peddling it like a bicycle (same as I had been doing for last year). I also continued walking on a treadmill for 10 minutes (1/2 mile) each morning, sometimes on a slight incline to get...
  6. jethro

    Ratio of ALS in a world

    as we know, it is 2:100 000. iran has 0,7:100 000 iceland 0:340 000 there are some people that dont know they have als etcetc. let there will be 4:100 000, that means 300 000 pals in a world. did anybody try to put number of reversals, plateau etc in that (let's say) constant number? ted harada...
  7. B

    New PEG

    Last Thursday I had a PEG or G-tube inserted. Procedure went well and it looks okay but very painful, especially when I move in certain ways. It was inserted because my breathing has become so compromised; therefore it will be dormant until needed. I underwent a "twilight" anesthesia but I...
  8. jethro

    Jaw clicking, overweight, fasciculations and advise

    app. month ago or so my (right side) jaw started clicking when i open my mouth widely, but not when i chew. i have no problems with chewing or swalowing and i have powerfull bite. just like kind of joint appeadred suddenly. is it als connected, or...? this has been discussed many times, i...
  9. KarenNWendyn

    Rate of disease progression

    I’ve read people on this forum saying “progression is slow until it’s not”. I’ve also heard stories about people diagnosed with ALS/ MND who look back and realize they had inklings of their disease years before diagnosis. My own experience is that I may have had some signs of ALS a few years...
  10. T

    New Trial IPL344 Israel ( anti Inflammatory ? )

    A new trial Phase 1/2a, open - Label, Dose escalating study. Based on anti Inflammation, with Intravenous administration of IPL 344 ? Apparently used by one compassionate use patient and showed to halt progression for two years ?
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