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Thread: I'm not out of the woods yet but...

  1. #1
    Join Date
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    Thumbs up I'm not out of the woods yet but...

    Things are looking up. I made a post here a couple weeks ago about some potentially serious health issues that I've been having. Several doctors had diagnosed me as having Loug Gherig's Disease (this scared me nearly to death). The situation came to light in mid September. I've been struggling with it since then. Three different doctors, numerous blood tests, MRI's, EMG's, etc. I saw the specialist on November 23rd and got the latest set of blood tests drawn. At that point he really couldn't rule out ALS but I had another EMG test scheduled for this Wednesday the 14th.

    I got a call from the doctor a couple hours ago. They are putting off the test until January 6th. This was disturbing news because I thought I was getting close to getting some answers and now it's pushed back another three weeks. But he did have some GOOD news. He informed me that they had gotten the blood work results back. Apparently it took a while because they sent if off to the Mayo Clinic which I had no idea they were doing. He told me this morning that it doesn't appear to be ALS!!!

    It does however appear that I have Adult Onset Tay Sach's Disease. But he said that is 1000 times better news than ALS. It sounds like he's looking into possibly getting me into a clinical study that's being done up in Toronto. I don't know if I'd have to go up there to participate or maybe they can ship blood samples and such from here to there. It sounds like a clinical study might help cover some of the cost involved that may not be covered by my Blue Cross. I really don't know what the prognosis is or what the treatments or "recovery" may be, but I feel like I've gotten my life back! He said that in twenty years of dealing with ALS patients, I'm only the third case of Tay Sach's Disease that he's seen. He's lost touch with one of the other two but the other one is still in this area and being treated by another doctor at this time. But he's been dealing with it for twenty years! So it sounds like the Tay Sachs may be much more treatable and easier to deal with than ALS.

    Thank you all for the previous well wishes after my last post. They appear to have worked! I just thought I'd give you an update.

    Take care and have the very merriest Christmas and happy, healthy, and prosperous New Year to all of you!

    John
    Last edited by John Pollman; 12-12-2011 at 07:11 PM.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
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    John that is wonderful news indeed!!!!!!! I am so very happy for you!!!
    My only concern with a study, someone is in a control group and actually doesn't get real meds. ???????????
    Jon

    God and family, the rest is icing on the cake. I'm so far behind, I think I'm in first place!

    Host of the 2015 FAMILY WOODWORKING GATHERING

  3. #3
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    Fantastic news John!
    Programmer - An organism that turns coffee into software.
    If all your friends are exactly like you, What an un-interesting life it must be.
    "A door is what a dog is perpetually on the wrong side of" Ogden Nash


  4. #4
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    Good news John.
    If you don't take pride in your work, life get's pretty boring.

    Rule of thumb is if you donít know what tool to buy next, then you probably donít need it yet.

  5. #5
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    well the doctor news is good but the lions are still hoping continue to get better john..
    If in Doubt, Build it Stout!
    One hand washes the other!
    Don't put off today till tomorrow!

  6. #6
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    I gave up on the Lions long ago. Those clowns are an embarrassment!
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  7. #7
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    Quote Originally Posted by John Pollman View Post
    I gave up on the Lions long ago. Those clowns are an embarrassment!
    You might want to keep that quite. You could get stomped on
    If you don't take pride in your work, life get's pretty boring.

    Rule of thumb is if you donít know what tool to buy next, then you probably donít need it yet.

  8. #8
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    Good news John. An early Christmas present, huh??? I'm with Jonathan, make sure what type of study group this is. If it is for watching how patients do on this particular drug, then that might be fine, if it is your's and your Dr.'s choice for drug. If it's a blind study, then half of the group is getting either another drug, or a placebo. When we were deciding on the chemo my wife was starting this time last year, we chose to not do the study because of that very thing. If we could have chosen which side to be, then ok. But that's not what a blind study does. Ask lots of questions of your Dr. He/she will give you the straight skinny. Jim.
    Coolmeadow Setters...
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    Home of Irish Setter Rescue of North Texas
    When Irish Eyes are smiling, they're usually up to something!!
    At a minimum, I'm Pentatoxic...but most likely, I'm a Pentaholic. There seems to be no known cure. Pentatonix, winners of The Sing Off, season 3


  9. #9
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    Wishing you well John.

    Could you bribe your doctor into finding out that you only have the flu? I know. I am a perfect example of why they don't send donkeys to school.

    The best to you and

    Enjoy,

    JimB
    First of all you have to be smarter than the machine.
    VOTING MEMBER

  10. #10
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    1000 times better.... That sure is good news!
    Best
    Garry

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