progression

  1. H

    Update

    So first I want to thank everyone for your time and effort in trying to help with my issues over the last 4 years. I have been back to USF and UF but still no answers other than they don't believe it's ALS but PLS is not ruled out based on my reflexes. Plus they have said that I have been...
  2. B

    Wrongly diagnosed

    Here goes about a year ago was giving als diagnosed by northwestern hospital in Chicago by neurologist department not much progression ran a few more test spinal bulged atrophy aka Kennedy disease not much better just curious they made it seem like no big deal have anyone ever heard of this...
  3. A

    Upset Rant

    Hi All, I'm having a really down day and need some help... and probably hugs.. i don't know. Here's a bit about us: My husband had his first symptoms 5 years ago in his calf muscles. Since then it pretty much stayed where it started, calf muscles. His toes are slightly affected, his knees a...
  4. L

    Update on symptoms

    Hi again everyone, I posted on here a couple of months ago regarding concerning symptoms but the thread is now closed; I feel my symptoms are progressing so am posting an update in the hope that someone can give me their insight as I remain very concerned. On my last neurologist appointment 3...
  5. A

    Finally have an answer

    Hello all, I received my second opinion at the Mayo Clinic this week and it is technically ALS. My neurologist was sure it was PLS due to the slow progress but my EMG showed a very small amount of lower motor damage. It is confusing but here is my diagnosis: "Diagnosis: Given and that she has...
  6. Tedstehr

    Edavarone in Canada

    I am creating this thread as a discussion on how to get Edavrone in Canada, and what I have discovered. Here is what I have learned so far. Mistubushi Tanabe Pharma is the creator of the drug. It is ultimately up to them if they want to sell the drug in Canada. If they do, it sounds like...
  7. swalker

    Hardware for Text to Speach

    As many of you know I banked my voice with Model Talker. I have the file that was produced installed on my ancient Samsung Galaxy S4 cell phone. I have been having difficulty using my thumbs to type of the phone's keyboard. As my voice continues to fade, I decided it was time to get serious...
  8. H

    Pain associated with ALS

    My sister has had ALS for two years and has been under hospice care for the last 9 months. She has just recently started experiencing occasional pain (as evidenced by increased respirations - she can't communicate otherwise), for which she is given morphine. This has only happened a few times...
  9. S

    Do I have ALS at age 18 ?

    Hello, I am an 18 year old guy, a hypochondriac to be honest. 2 Months ago, I developed knee pain, and foot stabbing. It felt like electricity I think. I thought I had bone cancer. I was stressing out about it. It got better with movement, and I forgot about it for a week - I really dont think...
  10. Erika

    Changes and progression

    My mom has been progressing. She's more fatigued, sleeps more, speaking is hard and saliva gets in the way. I don't mean to be too descriptive but her stools are runny and smell different since last night. Also, she feels full real quick into her feedings some days. So we're back to 3 cans...
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