Recent content by KevinM

  1. K

    Decision Advice

    Thanks so much for the idea, Kristina. Since I have absolutely no bulbar issues at present, that hasn’t been something I have had to think about yet. I will discuss it with Dr. Read if I go forward with the surgery. Kevin
  2. K

    Decision Advice

    Thanks so much for all your thoughts. Bill, you are right on target with your comments re: quality of my remaining time. Kim, I appreciate your suggestion to get other opinions, but I did a bunch of research (as did my PCP) on specialists in this uncommon condition, and Dr. Read is considered...
  3. K

    Decision Advice

    Great points, Laurie. Dr. Read couldn’t provide a prediction on whether the fistula might grow larger, stay the same, or even shrink. He did say that spontaneous closing of a bladder fistula was quite rare, and it most probably won’t close on its own with conservative management. I am 5’9 and...
  4. K

    Decision Advice

    I would add that he provided written confirmation of my diagnosis on June 6, 2019, and I am now on Medicare and SSDI.
  5. K

    Decision Advice

    No, but my GI issues are in the colon, not the small intestines. Worth talking to my PCP about, though.
  6. K

    Decision Advice

    I understood that your opinion was for you given similar circumstances, Nikki. I know of no GI issues related to diverticular disease that causes clinical weakness progression, atrophy, and fasciculations. I would give anything for misdiagnosis, but it is highly unlikely.
  7. K

    Decision Advice

    Thanks for the input, Karen. I’m actually surprised that both you and Nikki would opt for surgery. It is high risk, and I’m already struggling to maintain weight, so I would probably leave the hospital at 130 lbs on a walker. That’s assuming no complications, which are many that can occur with...
  8. K

    Decision Advice

    Thanks Nikki. I put a call into Dr. Pulley today. I’ll let you know what he says. There is also the problem of scheduling surgery if I did choose that route. Dr. Read is booked out a couple of months, so there is the probability I will be somewhat weaker than now. So many risks with this surgery...
  9. K

    Decision Advice

    Hello everyone. Apparently, I am the king of rare pathologies, and I would appreciate any thoughts on a decision I must make. Sorry in advance for the long post, but there is a lot to describe. I was diagnosed 8 months ago with LMN dominant ALS, and thus far still have good function. No bulbar...
  10. K

    Dizzying number of therapies

    Much as I enjoy reading ALS News Today with its almost daily announcement of new trials, drugs, etc., (Ultomiris, AstroRX, Reldesemtiv, AMX0035, Ibudilast, to name just a few), which thrills me at first glance, I think I end up more discouraged and angry than excited. I know this is a purely...
  11. K

    Suggestions for healing retreat centers?

    Hi Michael. As with anything, cost is a defining factor. If you have the resources (especially given our situation) let me suggest the Stanford Inn and Spa by the Sea, in Mendocino, CA. It is pricey, but the views are incredible, the little town of Mendocino is one of the most charming along...
  12. K

    Reluctance to go to clinic

    I also think there is a lot of variation in clinics, and the associated experience. Kevin
  13. K

    Reluctance to go to clinic

    I’d like to echo the sentiment re: questioning the point of regular clinic visits. I get that it is very therapeutic for some, but I don’t share that feeling. I have a very good and willing PCP here in town, and have established a relationship with a local pulmonologist. Any time I want to see...
  14. K

    Amylyx

    Thanks. Certainly out of my price range.
  15. K

    Amylyx

    Hi Nikki. Thanks so much for posting this (and happy holidays). So I’m clear, is the 3g/1g the total amount for the twice daily dose, or is that for one dose? Thanks, Kevin
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