1. I

    Day 1 of 2 first clinic visit

    We went to clinic for the first time today. Lots of tests but nothing different from was done before. My husband was a little frustrated about that. We thought there would be a bunch of different tests like a muscle biopsy or something like that. He also wanted to know how long he has. Dr...
  2. Tomswife

    50 ways to leave your clinic

    Slip out the back. Make a new plan. We are done. With the clinic that is. Too many balls dropped. Too much effort on my part pushing for care. Too many delays of weeks and weeks. Screw ups. If they really have 500 patients. They now have 499. - made virtual appt with the neurologist...
  3. J

    Please do not be too quick to say NO to possible ALS diagnosis

    About 3-4 years ago I came to this forum and asked the dreaded question "Do I have ALS". I had some fasciculations and cramping in my feet, balance issues, spasticity in both legs and slight speech changes. I was assured by members that my symptoms were NOT symptoms of ALS and I went merrily...
  4. K

    Drastic change in breathing

    Hi everyone. My dad was diagnosed March 2018 with ALS. He has limb onset. His breathing, swallowing and talking have not been affected as of yet. ... so we thought. Today he had a breathing test. His score is December 2018 was 92 and today it was in the low 60s. That seems like a drastic change...
  5. ShiftKicker

    For Canadians interested in Radicava

    The CADTH (independent advisory body Health Canada consulted with) has published its recommendations on Edaravone use in Canada based on their research and consultations with ALS patients, caregivers and other health professionals. From ALS Canada The report can be found here...
  6. D

    Peoria Illinois Clinic

    Has anyone gone to the ALS Clinic in Peoria?
  7. 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...
  8. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  9. 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...
  10. Jshemnitz

    Nervous I have ALS / Just saw a Neurologist

    Hi All, I have been reading a lot of the posts on this site for the past week and half and decided to finally post my own story. I have been dealing with a lot of weird symptoms lately and decided to see a neurologist about it earlier this week who specializes in neuromuscular issues and has...