Hello, I'm TerriK, Wife and Caregiver of my Husband diagnosed with Bulbar onset ALS one year ago. He started with syrupy speech in November 2015 and muscle atrophy in his upper body. After numerous tests, MRI's, Blood work, Doppler.........Visits to Neurologists, ENT's, GP.......etc.....we...
Hi everyone,
I have been reading the forum for quite a few months now trying to gather as much information on ALS as I can. My dad was diagnosed with ALS on 3/2017, they never stated if it was Bulbar or Limb-onset, but it all started with slurred speech at the beginning of DEC 2016, so we...
OK, I know this has been a risky, and possibly stupid decision, but I just am having the hardest time agreeing to the feeding tube. My doctor has been after me for over a year to have it done, but even though I understand the risks I keep resisting.
I can still eat normally with only...
Hello, I hope you can help me, and I apologize for asking such a difficult question, but I feel very overwhelmed right now. My mother was diagnosed in July with extremely progressive ALS. When she was diagnosed her lung capacity was at 30% and has diminished considerably since then (while...
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Hi, My name is Hayden Lovett.
So Iv had there symptoms for some time now all starting back with tremors and night sweets 1 year ago, then sore shoulders, chest and back pain, This came off and on for a while then developed into twitching 6 months ago.
Then full time tremors, twitching and...
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I've been breath stacking but bought a gizmo on Amazon (very cheap) that measures your inspiratory capacity. It has % for age. I was excited because on my PFT I had pretty bad lung capacity. On this gizmo it was normal. I know it's probably off but I decided, at least, it would show relative...
I went to the hospital for a visit today, because as my breathing gets worse, we've had to seriously consider adding a BiPAP to my conglomeration of various medical gear.
I was so nervous, but it turns out I didn't really have any reason to be. I've had some bad experiences with doctors in the...
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Do you really have ALS?
A diagnosis of ALS or any other motor neuron disease (PLS, PMA, PBP, MMN) is made “by exclusion” (no higher probability presents itself) and by published criteria, most critically symptoms and muscle/nerve tests.
Doctors may legitimately differ on whether you have...
Went to clinic last month and the Doc started pushing hospice. We have discussed this between us and don't see the benefits of going at this point in our trip down ALS's rocky road. At this point we get out 3 to 4 times a week, vital lung capacity is around 36%, but she is never short of...
Many thanx to those have posted their stories and especially the stickies...those have been helpful. Lots of good info there!
Back a few months ago someone kindly said that after my neuro consultation that they hoped (for my sake) that I would not be coming back to this site. I echo that...