Recent content by ChesterB

  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. ChesterB

    Onset of respiratory symptoms

    I’m getting a Trilogy next week. Looking forward to better sleep and less anxiety.
  3. ChesterB

    Onset of respiratory symptoms

    I’m in my fourth year since my diagnosis and so far it’s been limbs only. Within the last month I’ve been experiencing increased shortness of breath especially when lying on my back. I’ve also developed a twitch in by diaphragm when I inhale. Are these symptoms typical for someone at my stage of...
  4. ChesterB

    Living With Limb Onset ALS

    Thank you KimT and Jimi for the kind words advice. I'm going to try the local support group. They have a GoTo Meeting scheduled for next week. Oh, by the way Jimi, I have been working as a machinist, Tool & die maker, manufacturing engineer, and now I'm a QC technician for the last fifty years...
  5. ChesterB

    Living With Limb Onset ALS

    It's been almost three years since my diagnosis and I've been doing okay up until now. I've lost most of the use of my right hand, and my left hand seems to be growing weaker and losing dexterity and coordination. I'm at the point where all the adaptive dressing aids and eating utensils aren't...
  6. ChesterB

    ALS - diabetes T2

    I have T2 as well. It’s under control with oral medication.
  7. ChesterB

    ALS and Diabetes?

    I’m posting this because I haven’t seen any posts about this topic. I’ve been pre-diabetic for years and now I’m struggling to get and keep my blood sugar under control. I tried Metformin last year but gave it up after discovering that my body wasn’t absorbing the tablets. We’re trying Januvia...
  8. ChesterB

    Progression discussion

    I was diagnosed with ALS in October 2019 and my symptoms began over a year before then. I have limb onset in my right (dominant) hand and arm. Since diagnosis my progression has been super-slow, with fasciculations in both arms and legs and muscle atrophy affecting my right hand and forearm...
  9. ChesterB

    Back Trouble

    I've had back trouble for years, and now ALS at age 66. I was wondering if any other PALS have similar problems with their spine (particularly lumbar spine), and how you cope with it all. I will absolutely not have back surgery!!!
  10. ChesterB

    Oral Radicava Trial

    No, I held off the infusions for 8 months waiting for the clinical trial to start. COVID-19 delayed things. As far as side effects go, I have to add fatigue to the list. I dose at 5:00 A.M., and it lasts for about half a day.
  11. ChesterB

    Oral Radicava Trial

    Yes, it’s exactly the same.
  12. ChesterB

    Oral Radicava Trial

    Hello Everybody! I began the phase 3 trial At Wake Forest Monday morning. I was first in line so I served as the guinea pig for the doctors and staff, as it was new to them and they have to follow the protocol. All went well and I got the first dose, along with some lab work and an EKG. I was...
  13. ChesterB

    Slow Progression Questions

    AND I’M STILL WORKING!!!
  14. ChesterB

    Slow Progression Questions

    So much to deal with. I am 66 years old. In the last 16 months I’ve lost about 2/3rds of my hearing due to an accident, been diagnosed with ALS, began taking meds for diabetes, and recently lost a brother. My wife is my rock, and I love her dearly, but I’m trying to be as strong as I can so she...
  15. ChesterB

    Slow Progression Questions

    So slow. Don’t know if it’s a blessing or a curse.
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