bulbar onset

  1. D

    Wholeheartedly Believe It's Bulbar Onset

    Hi All, I sincerely apologise for coming on here again. (Last here in 2012). I just wanted to put my thoughts down into words due to the worry it is causing. Firstly I’m a 34 year old male who is very overweight and leads a very sedentary lifestyle I have had a large variety of symptoms which...
  2. 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...
  3. 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...
  4. affected

    aussie research leaps

    Some of you know of Neale Daniher who is a bulbar onset PALS and started the Big Freeze to raise awareness and money to fight MND. This is what is happening with the money at the moment...
  5. B

    C9 carrier with possible symptoms

    Hello everyone! This ended up being a very long post so I I'm going to put a tldr at the end for those of you with limited energy. This is my first post here and as a c9 carrier I will likely be lurking around for a while as it is the most comfort I have found so far. I want to say thank you...
  6. D

    Worried

    Hey everyone, thanks for reading. I am a 24 year old girl, no family history of ALS. I KNOW that I have health anxiety but I can’t seem to shake the idea that what I’m experiencing might be ALS. So two weeks ago I was home and my finger was twitching. Naturally I panicked and googled and ALS...
  7. S

    Very Concerned about Bulbar

    Thank you to anyone taking the time to read this and giving me your thoughts and insight. Please know that it is truly appreciated. I have read the stickies, but still have some questions. I am a 40 year old male. I began with a twitch in my left bicep in early December 2018, but the...
  8. K

    Optimal living situation- financially, emotionally, spiritually etc

    My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing. We have been discussing living arrangements as her mobility and breathing decline. Other pALS out there, what did you decide? Did you...
  9. L

    Question about Bulbar

    I really didn't want to post on here because I know those confirmed with this horrific disease have alot more on their plate. But I also recognize it is a great resource with alot of Knowledgeable people. A little about me, 42/m very active and big into fitness and bodybuilding most my life...
  10. K

    FVC at diagnosis and progression rate

    My mom’s FVC was 50% during her initial respiratory evaluation at the ALS Clinic at Mayo. Because of this, she is not a candidate for any clinical trials. She will be receiving a cough assist and trilogy. Does her diminished pulmonary function indicate ALS progression is aggressive? She is...
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