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  1. Aaronmandevill

    My progress update

    I’ve been waiting to make this thread because none of the doctors can explain what happened to me and they had lots of things they wanted to test for. Initially I was diagnosed with respiratory als with EMG and having very low overnight oximetry. At diagnosis I also had an EGD/laryngoscopy that...
  2. Aaronmandevill

    Apolipoprotein B-100, a possible CSF chelation treatment Target?

    Yes no research on the subject. This research is on spinal fluid. I try to make sure and say my experience is anecdotal and from the words of many doctors an N of 1 is useless
  3. Aaronmandevill

    Apolipoprotein B-100, a possible CSF chelation treatment Target?

    I wonder what they mean by immunodepletion. Have been trying to figure out why donating blood lessens all my symptoms, and sounds like it could be one reason if I’m reducing immune cells with donations.
  4. Aaronmandevill

    Corrected Nurown data

    I wonder if the spinal taps they do in Nurown or the Mayo stem cell studies are awake and done by an NP. When I was in cancer treatment they were so painful I wished they did radiographic or sedated ones.
  5. Aaronmandevill

    Removal of iv port after stopping IV Radicava

    I hate surgery/procedures (tried to run away during a colonoscopy I woke up during!) and the removal of my chest port from cancer treatment was entirely painless. Didn’t even feel any pressure and there was a veil I couldn’t see through for what they were doing. They even were training a...
  6. Aaronmandevill

    Online survey for PALS on neck braces from Mass General

    Thanks for this, with respiratory onset my neck weakness is extremely prominent early and have been working through several collars. Will check out the study!
  7. Aaronmandevill

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    Living in the moment is the only working for me right now Joanna. Hope you can relish every minute! I’ve been out eating delicious foods and watching movies as well, while we can! Learned to make homemade sushi last night. Tonight was baked crab legs. Earlier this week I went to a seafood...
  8. Aaronmandevill

    Trilogy question

    I’m currently using S10 ST-A and I bought a backup battery from Amazon called Jackery (298kWh) and it lasts for a very long time with my bipap/humidifier. Haven’t went past 50% in a whole day of use. The backup was $299 usd
  9. Aaronmandevill

    Oral Radicava

    I found the out of pocket cost is $19,000 per month so that’s probably why the fight is so hard right now for insurances
  10. Aaronmandevill

    Is microbiome cause of ALS, or at least - related?

    For what it’s worth I’ve had internal/external hemorrhoids my entire life. Also have been a heavy drinker at different periods of my life which I know is bad for the gut biome. Probiotics make me feel a lot better overall.