1. C

    Started Hospice and have questions

    I went for my clinic visit a couple weeks ago and the neurologist suggested hospice. I've lost 18 lbs in 3 months. I knew I lost some weight but not that much. My FVC was 39, down from 41 three months ago. Both my husband question the accuracy of this reading as we've both noticed a...
  2. dkcarl62

    Sleeping all the time

    Greetings friends, Asking for your input for a increasing concerning problem. I can't stay awake. I fall asleep while getting my nails clipped, taking a tube feeding, in the middle of writing an email, in the middle of doing exercises. It doesn't matter if I just woke up, I could go right...
  3. Buckhorn

    PEG placement with FVC of 31?

    So, my husband has just recently agreed to a PEG placement, and we are actually scheduled for it 12/5th. He has no problems chewing, swallowing or talking at the present time. However, his respiratory state has continued with a predictable decline. I have read here on the forum that PEG...
  4. G

    Still in «limbo»

    Dear all great people in here!! I posted here in march for getting advise on my Emg results. I am still in the limbo have had one more Emg since last. This was abnormal and showed spontanious activity but not enough to diagnose. The worries are my symptoms are getting Worse and I am so worn out...
  5. Ed340hp

    Tirasimptev continues VIGOR ALS

    I'll get to the update. The VitalityALS phase three trial ended or all participants and trials in October. All reports and data were due for submission. They now think it will be March before publication. The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers...
  6. Kristina1

    what an impact

    I was living in a house with tons of stairs that I had to go up and down many times every day. I was struggling to manage stairs due to upper leg weakness and poor balance. So we moved to a small ranch style house with no stairs. After the first week I already noticed a huge increase in my...
  7. P

    EMG Question

    I have had 2 EMGs both came back clear, 30 days apart, only symptoms before were fasiculations & an FVC of 84 which I was told was concerning by the pulmonologist, said it was more so my ability to get air to my small airways & the value of FEF25 While I feel good about my EMGs I am having...
  8. P

    Questions about tracheostomy

    I at the point where FVC is about 20%, and I'm have a lot of trouble breathing. I have had my trilogy adjust 4 or 5 times. I have also had 4 overnight o2 saturation test done. In all the tests my 02 saturation has been between in the low to mid 80,s and that's with oxygen. I also have periods...
  9. LizF

    PEG-potential downsides to early implementation?

    After quarterly spirography testing, my FVC has been 96% + since diagnosis in June 2016. However, my most recent test (last week) shows I have dropped to 71%. My respirologist is concerned, as that's one big drop, and has booked me for another test in December instead of waiting quarterly. He...
  10. J

    What should I be expecting to happen now?

    This is my first post in the forum. Although my husband was diagnosed at 38 years old, and 6 years ago already. I never posted before because I just couldn't bare to read what was coming. However, it is now a point in our lives when I think that important decisions will need to be made, and I...
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