therapy

  1. KimT

    Dentist

    Today I had my remaining crown replaced with a temporary. In two weeks I'll go back for the permanent. The last thing I wanted to happen was for a cracked crown to break off when I'm not as mobile as now so I had it done. They had all the info in my chart and there was a new dentist only 28...
  2. F

    Concerned after initial neuro exam

    Hello, everyone. I was just wondering if I would be able to get some feedback and opinions from the wonderful people on this forum. I realize you guys get a lot of questions regarding things don't seem to be related to ALS, so I apologize in advance if I go down the same path. First of all, I...
  3. T

    Radiation therapy for secretion management

    Was hoping for feedback from this useful group on their experience with radiation therapy for secretion management. To date, we have been managing my PALS secretions with a combination of scopolamine patches, glyco subQ injections (pills were not effective and he now takes injections every 4...
  4. M

    Neurologist follow up

    Going in on Friday for a follow up with my neurologist because I have finished physical therapy with no improvement. I was previously diagnosed with cramp fasiculation syndrome but it doesn’t appear to be the case because I have weakness and atrophy noted by my physical therapist... which at the...
  5. J

    Brainstorm Nurown 'Right to Try' participant shares progress

    As some of you may know, Brainstorm granted one PALS free access to NurOwn as a 'thank you' for the work he did on Right to Try. He is not in a trial but is being given the course separately. His update is on Facebook -- matt.bellinski.7 Mod note -- not linking directly due to fundraising...
  6. U

    What is going on with me?

    Ok back in november 2015 I inhaled coolant at work and instantly got a pain on the back of my neck and felt like I was going to puke for like 12 hours. Few months later something happened with my brain causing my perception to change and my memory got impaired and my personality slightly...
  7. I

    Drugs and PT for PBP?

    I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast. Until about...
  8. Doglady

    HERV-K suppression study

    Wondering what others may think of the idea of Human Retro Viruses being thought to be a cause of ALS and use of HIV drugs to treat PALS? Info on the study: https://www.ninds.nih.gov/Disorders/Clinical-Trials/HERV-K-Suppression-Using-Antiretroviral-Therapy-Volunteers-Amyotrophic The clinical...
  9. Jamesgol

    Diagnosed 12/20/2018

    I first started having symptoms 3 years ago. It started with a little left leg weakness and fatigue. My PCP said I was just getting old and that being tired was a symptom of every disease. Over the course of 3 years my left leg got weaker and weaker, and the fatigue continued. My PCP...
  10. M

    Emg

    My previous threads are old and have been locked so that is why I’m opening a new thread. A couple months ago I did get an emg and based on the results my neurologist came to the conclusion I have cramp fasiculation syndrome. The reason why I was given that diagnosis was because to him I didn’t...
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