pls

  1. B

    Switching to UMND/PLS

    Wow, each neurologist has a different answer! During my first 3 and a half years, several neurologists said probable PLS. When I was sent to Clinic, that neurologist described it as a “slow progressing variant of ALS.” He didn’t like the term PLS, saying that all fell under ALS. Now a year...
  2. Clearwater AL

    Fasciculation

    I’ve been reading a lot of Threads and posts concerning Primary Lateral Sclerosis. And… this sub-Forum has been relatively quiet. Not to cause a stir but maybe create some discussion. If you have a confirmed or possible diagnosis of PLS and you are having fasciculation they are real but…...
  3. ShiftKicker

    Ataxia/tremor in PLS?

    This post is specific to those diagnosed with probable or definite PLS. I recently had yet another ALS clinic appointment. The neuro had a resident with them, so my exam was both longer and more thorough than usual- and conducted with running commentary for teaching purposes. I received my...
  4. P

    Hello

    Hi there. I am a new caregiver to a young man with PLS. Just here to educate myself and learn how best to help him. He says he doesn't want pity but my heart breaks for him. I don't pity him....I just have grown to care about him. As a caregiver is this normal? I know it's a job but I feel...
  5. R

    If you have a passion for ALS advocacy & good public policies, pls join us

    Please join us for something new Feb 13-14, 2018! https://www.morethanourstories.org Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the...
  6. R

    Newly Diagnosed at Mayo Thanksgiving 2017

    I was diagnosed Wed before Thanksgiving 2017! I went to Mayo believing I had NPH (normal Pressure Hydrocepheous) I had been to 4 local Neurologist and all felt it was NPH, but because Spinal Tap and draining 40 CC of spinal fluid didn't help, we ere playing "stump the doctor" EMGs on Legs were...
  7. BlsdMama

    Can we discuss reflexes?

    I have a working diagnosis of PLS. I’m aware of the statistics. So far two clean EMGs. Had a Neurology appointment at my research hospital, not Mayo. Mayo has dx’d PLS as well but because a glycine receptor antibody was found a trial of IVIG for Stiff Persons was ordered. I’m about seven...
  8. David

    Leapcure Muscle Cramp Trial

    Do you have frequent muscle cramps? Have you been diagnosed with a motor neuron disease like Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), or Progressive Muscular Atrophy (PMA)? If you’ve been diagnosed with motor neuron disease and meet the requirements listed below, you...
  9. L

    Confused

    Hiya guys, New to this forum thought i would introduce myself. I have enjoyed reading all your helpful posts. I was having a nosey round but couldnt find an answer to my query specifically so while saying hello i thought i would ask here. So the very short version of a very long story.... i...
  10. H

    Humbly asking for experiential input

    Hello I am mid 40s yo male with a background in the medical field. I would like to ask anyone if their symptoms started like mine and any recourse I would have pending. 4 months ago my legs started be tired and heavy proximal but wide fluctuations. I am a very anxious person and als fears came...
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