Recent content by Lynk

  1. Lynk

    B-12 Study

    Thanks Vince. I don't think it is giving me more energy, a and all I can sa y is that my decline seems relatively slow. I think I will keep taking but maybe not every day. Lyn
  2. Lynk

    B-12 Study

    Last January I had a whole array of blood work done to try to figure out what was wrong with me. My B-12 was almost below normal range, but just above it. (Normal is 211-946 pg/ml and mine was 225) My local neuro who ordered the tests didn't say anything about it...I guess because it was in...
  3. Lynk

    My Terms

    Hi Charlie, This discussion is a hard one and different people react/relate in different ways. Before I was officially diagnosed I really thought I had ALS and scared myself to death (ha ha) thinking about it. I researched ways to die with dignity, bought some books on the subject online. I...
  4. Lynk

    Riluzole

    I wasn't sure I wanted to take it either, but decided to give it a try. I figured I could always stop it. I've been taking it since 1st week of June 50 mg twice a day. So far it doesn't affect my stomach and though my liver enzymes are a little elevated, they are within the OK range as per...
  5. Lynk

    Availability of Riluzole

    I called for a refill of Riluzole about a week ago to Publix Pharmacy. They said they had ordered it and would be there the next day. A week later they say that it is unavailable from the manufacturer. We were able to find some at a CVS so I'm fine for the next month. Has anyone heard of this...
  6. Lynk

    B-12 Study

    Okay! I figured it out..duh! You take 8 quick dots at 5 mg each.
  7. Lynk

    B-12 Study

    Bob, I am unable to find the 40mg vitacost online. I looked on the Vitacost direct website, but the highest dose I see is 5 mg. (or 5000mcg) can you give me more specifics about your source for the sublingual type? Thanks very much. Lyn
  8. Lynk

    B-12 Study

    I heard from my local neuro guy yesterday that he won't prescribe injections of methylcobalamin because they aren't approved by the FDA. He will prescribe injections of 1000mcg of cyanocobalamin. I guess the issue is getting insurance to pay and how to get needles because it is possible to get...
  9. Lynk

    B-12 Study

    Bob, where do you get your 40 mg of Methylcobalamin? What brand? My b-12 was very low normal (almost at the lowest number inside of normal) in a Dec 2014 blood test but nobody said anything about increasing it. When I saw dr. Pulley in August he said it should be twice as high and suggested...
  10. Lynk

    Guess I'm in the Club

    Hi Kim, I have been in Florida ALS diagnosis to. I went Shands in May...got a bad EMG, but no firm diagnosis...possible/probable...not sure which. I was told to come back in November, but then had definite decliNe since May so went to Dr. Boylan in July. I had to work it out for a second opinion...
  11. Lynk

    Medicare Supplement

    I'm so envious of people who live in Oregon.
  12. Lynk

    Florida PALS--Clinic comparisons

    Hi, We are scheduled for a clinic at Jacksonville Shands with Dr. Pulley on August 18, which is covered by our insurance. We also got scheduled for a Dec. 17 clinic at Jacksonville Mayo after we saw Dr. Boylan last week. Our insurance doesn't cover Mayo but we are on one of the dates at Mayo...
  13. Lynk

    Just changed from being diagnosed to diagnosed

    Thanks for the advice. I will look into the arm rest. Is this anything that you can get help with through ALS Assn? They cost $50 -70 which is probably worth it. Also Mike..I read your blog about how people can't deal with this...I get it...my father killed himself when I was 21 and when...
  14. Lynk

    Just changed from being diagnosed to diagnosed

    Hello, Yesterday I saw Dr Boylen at Mayo Jacksonville and he made the call that the doctor in May was not ready to make. I think I am relatively early in the progression, but I have declined since May and now have regular spasms in my hand and not much use of my forefinger. Arm is very tired...
  15. Lynk

    Long post--advice requested

    Thanks Green Queen. Off topic, but I'm in love with Australia and Australians. I've been there 6 times (so far) :). First visit was in 1982 when I spent 3 months traveling from Adelaide to cairns. Though never to western part. On my bucket list.
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