Search results

  1. Will

    Cholesterol and ALS

    My PALS was diagnosed today with Familial Hypercholestoralemia. I have not read much on this forum about ALS and cholesterol. Someone once mentioned it was not an issue. I don't know if that is because ALS is so much more immediate or what. MY PALS is 3 years stable, still can walk, and does...
  2. Will

    Substitute for Rilutek

    Rilutek is becoming too expensive for my PALS after 3 years. I know it is an antiGlutamate. Are there any dietary supplements that perform a similar task?
  3. Will

    Maximum Inspiratory Pressure (MIP) Test

    My PALS recently failed a MIP (Maximum Inspiratory Pressure) test. He passed the FVC test with 100%. This was the first time he ever experienced this test in the last 3 years since diagnosis. The respiratory therapist recommended a BiPap, but the Neurologist didn't think he needed one. He has...
  4. Will

    Long Term Use of Rilutek

    Now that my PALS has passed the 3 year mark with Rilutek, I was wondering if there is any info on issues with LONG TERM use. There have been no side effects so far that we can tell, but he has developed some odd leg, thigh, knee and hip pains (sometimes burning, sometimes stabbing) lately.
  5. Will

    Arrested Progression.

    After 2 1/2 years of ALS with no progression beyond the original presentation, our ALS doc said the Jim had 'arrested' ALS which is very rare. He does have the weakness, fasics, etc that originally brought him to ALS, but they have not progressed beyond the original diagnosis state! (legs, feet...
  6. Will

    Shifting Possible Diagnosis

    Hi, my PALS has been diagnosed for 2 years with ALS. But after not progressing, doctors are looking around for other possibilities. One possibility mentioned in Amyotrophic Mononeuropathy. Can't find it on Internet Search. Anybody know what this might be? Thanks.
  7. Will

    Vitamix blender

    Am I going to need a Vitamix to make PEG food, or will other blenders (a little less) do the job. We have to watch our money.
  8. Will

    When to get off Rilutek

    I was on the Rilutek website today, and they state that after 18 months, Rilutek and placebo perform the same. So, does it make sense to get off that drug after 18 months of taking it? I know many of you do not take it at all, for many reasons, but those of you who do, when is the right time...
  9. Will


    We are trying to decide how we are going to handle toileting. We both would like a toilet with a bidet (wiping him is not my cup of tea), and thought that an extension lifting the whole toilet may make it easier to get on the toilet. But what will we need when he is too weak to get himself...
  10. Will

    Diagnosis and Medicare/SSDI

    I was told there are 3 levels of ALS diagnosis....Possible ALS, Probable ALS, and Definate ALS. My PALS was diagnosed with "Anterior Horn Cell Disease, likely ALS" and was turned down for Medicare/SSDI. 2nd opinion concurred. He is on Rilutek and goes to an MDA/ALS clinic. He can still walk...