onset

  1. I

    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
  2. K

    Drastic change in breathing

    Hi everyone. My dad was diagnosed March 2018 with ALS. He has limb onset. His breathing, swallowing and talking have not been affected as of yet. ... so we thought. Today he had a breathing test. His score is December 2018 was 92 and today it was in the low 60s. That seems like a drastic change...
  3. S

    Question

    Hi, I know I have been here before but I just have a quick question and I don’t want to google.... I have body wide fasics- for over a year, no weakness but feel like I have mouth throat pnd drip issues, constant phlegm. My question- when someone has bulber, and they have bodywide...
  4. K

    Club membership at hand

    Well, damn. My local neurologist, after two months of elimination tests, has now indicated likely NMD, with ALS being the most likely candidate. He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion...
  5. C

    Scared that I might have onset als.

    Started 2 months ago with a twitch in my arm. Fast forward to now, it’s all over but mostly in my tongue.Since it has started in my tongue about 5 days ago, I sigh and yawn a lot. Also get random 1 hiccup throughout the day everyday even when I haven’t eaten. I’m sorry if I have burdened anyone...
  6. C

    Questions about Symptoms/EMG

    Thank you all for taking the time to read my post and I would appreciate any advice or knowledge you can pass on. I have read the "before you post sticky". So this all started the the 1st week in Dec, I woke up 1 morning and had a persistent twitch in my left thigh. It prob went on 4-5 days...
  7. D

    My symptoms

    Hello I have read all the things I should before posting so please just hear me out as I have done a lot of research. First of all let me just say I am proud of everyone in here who has dealt with this horrible disease, now I know twitching isn’t a sign of als but can come along with it. My main...
  8. E

    Predictive model based on ALSFRS-R score?

    Hello, Does anyone know a good model of disease progression based on ALSFRS-R score? My father was told his score was 38/48, after 2.5/3 years since symptom onset. Could anyone point me to a good resource where rates of progression are plotted?
  9. S

    Bulbar?

    What is the horse ness like with Bilbao onset? I’ve had twitching for 4 months with no muscle failure but I am horse now but I’m wondering if it’s allerogoes or a mild cold or bulbar?
  10. T

    How to best help my pALS in early stages?

    Good evening -- I'm asking all of you to share with me some ideas, tools, methods, anything that I can do to help my pALS with regular living tasks. He works just so hard to so such simple things -- getting dressed, undressed, etc - I know you guys know. He is in the early stages -- leg...
Back
Top