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Thread: I got good news in Minnesota!

  1. #1
    Join Date
    Nov 2006
    Rochester Hills, MI

    I got good news in Minnesota!

    I've made some other posts to update my visit to Minneapolis, but now the study is over and we're about half way home and stopping for the night.

    Back to the hotel and all full up. We're going to watch some TV and relax and then hit the sack.

    We met with doctors Utz and Whitley for about an hour and a half this morning. They are still waiting on some tests that will take a few weeks to get the results on, but everything they saw looked fine they said. My MRI looks good and they found some things on my brain that they said they didn't expect, but they don't think it's a problem. The good part is that MAYBE this could be a clue! Who knows, something they haven't seen in other LOTS patients shows up could be a good thing. This is the kind of info they need.

    I'm now officially enrolled in TWO studies! One natural history study and the other paperwork I signed is a consent form that gives them permission to share my data with others. Dr. Utz said that they may even use some of my data to write a paper and submit it for publication in some studies or journals!

    It's going to take a few weeks to get the genetics reports done, but they are trying to figure out which mutation of the gene I have. Once they do, they want to start me on pyrimethamine. They say that they have been using it with some success. They are still looking at Zavesca too though.

    I've got to go back to Minneapolis in September. I've already got an appointment booked. To tell you the truth, I'm excited about starting on the new meds and for the return trip in six months to see if they're having any effect. This has been a stressful but exciting week.
    Last edited by John Pollman; 03-07-2014 at 03:43 AM.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
    Join Date
    Dec 2008
    Santa Claus, In
    Great news John, at least there might be a light at the end of the tunnel
    If you don't take pride in your work, life get's pretty boring.

    Rule of thumb is if you don’t know what tool to buy next, then you probably don’t need it yet.

  3. #3
    Join Date
    Dec 2006
    Independence, Kentucky
    Glad to hear that report John, it sounds like they have eased your worries and things are looking up for you.
    I'm supposed to respect my elders, but its getting harder and harder for me to find one now.

  4. #4
    Join Date
    Nov 2006
    Delton, Michigan
    glad you got some new hope john to bad we dont have them kind of doctors in all of our hospitals..
    If in Doubt, Build it Stout!
    One hand washes the other!
    Don't put off today till tomorrow!

  5. #5
    Join Date
    May 2007
    Kansas City, Missouri
    That is great news John.

    To a small child, the perfect granddad is unafraid of big dogs and fierce storms but absolutely terrified of the word “boo.” – Robert Brault

  6. #6
    Join Date
    Dec 2006
    Yorktown, Virginia
    Very encouraging John. Let's hope for the best in September.

  7. #7
    Join Date
    Apr 2007
    No, not all of SoCal is Los Angeles!
    Excellent news. Keep swinging.
    Any sufficiently advanced technology is indistinguishable from magic.
    - Arthur C. Clarke

  8. #8
    Join Date
    Jul 2009
    Amherst, New Hampshire
    Sounds encouraging. Glad for the good news
    Faith, Hope & Charity

  9. #9
    Join Date
    Feb 2007
    North West Indiana
    There you go!!!!!!! Excited for you!!!!!!!!! That is fabulous!!!!!!!! Way to go Mr and Mrs John!!! Took the bull by the horns and put him to the ground! Next thing you know, your output will rival Allen's on projects!

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


  10. #10
    Join Date
    Aug 2007
    Reno NV
    That is some good news!
    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

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