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  1. preacherman

    CK Levels and ALS Progression

    My level has been consistently around 480... going on 6 years. I hate to say this often but my progression has been pretty much nothing for the last 3 years or so. I feel very blessed. I had heard that a moderately elevated CPK level is a good sign for a better prognosis... seems right to me...
  2. preacherman

    Eye problem(s)

    Hi, This one caught my eye..... sorry, had to say that. Really though, the issue that I have started having is that my vision will start twitching very rapidly back and forth. After talking with the doc his thought was that it was fasiculations with the ocular muscle or muscles... Started...
  3. preacherman

    Radicava

    lisa g, one thing, I said I could do all that but I didnt say how well.... Yes, all that insurance and prices is crazy. I am VA and they take care of all that stuff but I have seen and heard a lot of crazy stories. I do home infusions and it is going well and much less hassle than having to go...
  4. preacherman

    Radicava

    Hi, I was diagnosed April 2016 and I started radicava I think December 2017... might have years or dates off but it's been a while. Not really any side effects except that I seem to have developed a lot of allergies to odd things... adhesives, ointments, things like that. I had a picc line...
  5. preacherman

    COVID Vaccine

    I guess I should add though... just got pretty much completely over covid within the last couple of weeks so... Ironic part... I probably got it from my home health nurse. She came on a Wednesday to access my port for radicava infusion. County health dept called on Friday and said the nurse...
  6. preacherman

    COVID Vaccine

    First, no vaccine that new could possibly have been proven safe over an extended period of time. Before deploying to Panama in 1979 I was given 11 inoculations... nine of which were shots and that was on top of all the many shots I had received upon processing in to the army. The army has no...
  7. preacherman

    COVID Vaccine

    VA offered it to me... said health workers first, very high risk next. I very politly replied... ummmm, no thank you.
  8. preacherman

    PVA/newly diagnosed

    Not sure what my point is here, but..... I received a 'probable' diagnosis from Mayo in Rochester, MN April 22. Returned to Sanford in Fargo where I had initially been seen and was told 'definant' ALS on April 26. Turned my paperwork in to PVA in South Dakota April 28. Approved April 29. First...
  9. preacherman

    What’s your fight?

    I have always been a very busy person, usually too busy. I have carried two different lives around with usually enough energy for only one of them so, depending on which I chose at any given time, one would take away from the other. After the military, by trade I was usually a floor covering...
  10. preacherman

    What is cause of pure balance in ALS?

    Just my experiences... No big history here for now, just to say that the troubling issues that made me start the diagnostic process were mainly balance, brain fog, occasional aphasia, unsteady on my feet. The neuro who finally got the ball rolling and ordered an EMG was actually looking for...
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