bulbar onset

  1. C

    FVC and Sleep issues

    My husband is bulbar onset. At the last clinic visit his FVC was 58%, however, he is feeling pretty good and is not exhibiting many symptoms of breathing issues so the doc did not think we needed to look at a bipap at this time. He said because his mouth and lip muscles are so weak, the...
    • codyclan
    • Thread
    • advice bipap breathing breathing issues bulbar bulbar onset clinic depressed fvc issues muscles night onset progression sleep symptoms
    • Replies: 11
    • Forum: Current caregivers
  2. K

    My dad is newly diagnosed but his symptoms confuse me

    Dad has been diagnosed with bulbar onset ALS. His voice is very weak and his swallow isn't good, though he refuses to get a feeding tube. He is still just as mobile as he always was, though there is a lot of obvious muscle wastage. However, he's 68 but as physically active as a man half his age...
    • Kittycat
    • Thread
    • age als bulbar bulbar onset confused dad diagnosed diagnosis feeding feeding tube lift mobility muscle newly diagnosed onset swallow symptoms voice weakness
    • Replies: 6
    • Forum: Newly diagnosed
  3. T

    Help! Bilateral onset, bulbar onset?

    Thank you all for this site. It has been so helpful and full of information. I’ve been reading through it the past few months, but now I feel the need to post. I thank everybody for their help and wish you hope and peace will everything you are going through. I have also read the "sticky"...
    • thomas71
    • Thread
    • autoimmune back brain bulbar bulbar onset clinic diagnosis emg fatigue fibromyalgia fingers help! hope information lift lyme meds mri muscles onset pain pressure progressive weakness reading shoulder symptoms test thumb weakness wrists
    • Replies: 8
    • Forum: Could this be ALS?
  4. F

    Nuedexta

    Has anyone with bulbar onset had any success with Nuedexta used to slow progression and help with speech and swallowing?
  5. M

    Keep hoping this is a bad dream:( mom recently diagnosed

    HI, I am Mandy, I have been looking around for a few weeks. My mom (age 58) was diagnosed officially a on March 4th. I dont think i have ever felt more alone... She has bulbar onset which we initially thought may have been a stroke related to the stress of losing my grandmother (that she cared...
    • Mandyintn123
    • Thread
    • age als breakdown bulbar bulbar onset children clinic dementia diagnose diagnosed grace immediately life neurologist onset peg questions stress stroke support
    • Replies: 8
    • Forum: Newly diagnosed
  6. 3

    Last question

    I am extremely scared. My tongue feels swollen and enlarged (although visibly it isn't). I can swallow and talk. Is this an early symptom of Bulbar onset? I will go away after this question.
  7. P

    Excessive saliva

    Hoping someone may have some pointers for my mom. She has bulbar onset that his seemed to ramp up over the last couple of weeks. She is experiencing excessive slobbering. It gets worse when she tries to speak it spews from her mother. The specialist prescribed some drop (can't remember name)...
  8. C

    41 Yr old Male very concerned Bulbar/ALS

    Hello, I would like to share my sympathies for all those dealing with ALS either as a patient, family member or caregiver(s) Looking back my concerns started about 7 months ago. I noticed a buzzing feeling in my head and body to an extent. It was coupled with a pronounced heart beat. About 4...
    • canaz
    • Thread
    • als arm arm weakness back bfs breathing bulbar bulbar onset caregiver concerned early emg family family member medicine mnd mucus neurology night onset pain reading sleep speech symptoms tremor twitching vitamins weakness worry
    • Replies: 20
    • Forum: Could this be ALS?
  9. J

    Decline Question

    Hi My Mother was diagnosed with bulbar onset ALS summer 2012. She is currently almost completely paralyzed (some hand and arm movement), on bipap 24/7, has peg tube, in bed at all times due to sitting up it hurts to breath (with bipap), on Hospice. She is on anxiety medications and some pain...
    • jab1222
    • Thread
    • advice age als anxiety arm bed bipap bipap 24/7 bulbar bulbar onset decline diagnosed hospice medicine morphine movement onset pain paralyzed peg
    • Replies: 12
    • Forum: Current caregivers
  10. B

    Quickly losing the ability to speak

    I was diagnosed in April, 2014 with Bulbar onset ALS. I have been fighting hard to keep my voice, but I am quickly losing my ability to speak. I speak, but no one understands me. I'm asking for some advice. I am computer literate and have all the usual toys (Ipad, Ifone, laptops, etc.)...
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