1. ChesterB

    Fasiculations and Progression

    I'm now in my 5th year since the onset of symptoms, and 4 years since official diagnosis. My main symptom has been muscle fasiculations in my limbs. At this time my muscles atrophy has progressed quite a lot, I've lost about 40 lbs. in the last year, and just in the last few days I've noticed...
  2. R

    Fast progression

    How do people deal with fast progression? I was still independent in Oct22 with an early 40 alsfrs score but been dropping 3pt per month and now i am like a quadriplegic with a peg and almost non verbal (wheelchair bound ). Fyi im only 37 and was expecting maybe ill progress slow based on the...
  3. I

    Fast progression?

    My PALS feels his progression is fast. In November 22 when he was dx, he had trouble walking and his weakness in his arms, muscle twitches and tremors. Today he can still walk, but it’s gotten slow and he had a fall recently so he uses a walker. His neck is starting to droop and his posture is...
  4. Nikki J

    Research on progression rates there is a free access to the full paper. Look at top right of linked page
  5. M


    I knew that my walking speed has gone down another notch, but today I got an unpleasant surprise. I was reaching farther into my 19yo's closet to see what pizza boxes, etc., he was hiding under a well-draped jacket on the floor. I used to be able to bend at the waist, pick something up from...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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?