progression

  1. 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...
  2. R

    My wife (36y)

    Hi, 8 months ago we was on holiday, she run, rode a bike, walking 10km. In August she has started to have fasciculations in the thighs and with the index finger. In October she got damage to peripheral nerves diagnose without any motor neurons damages. In February this year we had new tests and...
  3. K

    Club membership at hand

    Well, damn. My local neurologist, after two months of elimination tests, has now indicated likely NMD, with ALS being the most likely candidate. He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion...
  4. V

    First ALS Clinic Visit

    Yesterday we had our first ALS Clinic visit. I think my PALS was overwhelmed by all of the people. He says he is very tired. He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left...
  5. E

    Predictive model based on ALSFRS-R score?

    Hello, Does anyone know a good model of disease progression based on ALSFRS-R score? My father was told his score was 38/48, after 2.5/3 years since symptom onset. Could anyone point me to a good resource where rates of progression are plotted?
  6. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  7. T

    Symptom Questions from 35/m

    Hello, I hope you are well or as well as possible. Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated. I've refrained from ALS symptom-checking on...
  8. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  9. V

    Concerned about Progression

    Hello everyone, I posted back in October about some worrisome symptoms that I was having. The main symptom being a feeling of being off balance while standing. That has gotten worse. Since then, some things have changed. My calves have constant fasciculations. They never stop. I was very...
  10. N

    Greetings to All

    Hello Everyone, I've been all over the website now for a while and have read a wealth of information that I have found useful as I negotiate my journey . So a big Thank You to all of the contributors that have taken the time post . Your experiences and knowledge have already helped me as I...
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