bulbar onset

  1. R

    Worried I may have ALS , scared beyond belief , no one to talk to

    Hello everyone , thank u for taking time to read my post , any and all feed back is greatly appreciated , and for all of u suffering with ALS I pray for u all and am starting a campaign to raise and donate money for ALS ! Ok so here is my story , for the past 2-3 years I have suffered with what...
  2. 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...
  3. 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...
  4. 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...
  5. R

    Terrified Bulbar or Limb Onset? Varying Symptoms

    Hello, I've been reading this forum for a few weeks now and I've held back from posting my symptoms but it seems to be progressing so I'm more anxious. I'm 28 year old male and I'm extremely worried that I might have early symptoms of Bulbar or Limb onset ALS. It all started about 7 months ago...
  6. A

    Please help.I need a opion at least!!

    Hello everyone, and sorry for my thread.It took me while to get the nerve to post here because i really think the best of you wonderfull people, but i am very freaked out. It all started 2 months ago when i got some fasciculation on my right upper leg.Since than, i started to have widebody...
  7. N

    Does this sound like bulbar onset?

    Earlier this week whilst driving my car I started whistling along to a song and not much sound was coming out, this is strange because i normally have a very strong whistle. I got worried and panicked a bit. Fast forward to this morning, I tried to get my dogs attention and went to make that...
  8. B

    Very scared abt Bulbar Onset, plz help

    I would like to thank all of you in advance for reading my concerns. I am 39 yeasr old male. It all started in july last year. Initially i was suffering from burning pain in my arms and legs. I went to a dibatologists. But my sugar level came normal. Then I went to a neurologist. He adviced some...
  9. R

    need opinions and guidance

    Hello to all, I am new to this group and would love some information and perspective on people who have seen this terrible disease first hand. I am posting for my mother who is 58 years old and experiencing an array of symptoms and problems for about 5+ months now. This all started back in...
  10. S

    Update - 12/24/18 - Extreme bulbar worries

    Hello everyone...I hope everyone is having a good Christmas season. I wish I could say the same. It's been almost 6 months since I have been here. Some things have gotten better and some a lot worse/terrifying. I was hoping to never have to come back here but my situation has dictated I do...
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