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  1. #16
    Join Date
    Apr 2006
    Location
    somewhere between the Red & Rio Grande
    Posts
    5,297

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    Brandi- (((HUGS))) I admittedly have only followed parts of Lorelei's struggle.

    Has your sister sought out a specialist in immune systems disease or maybe infectious disease (according to my doctor friend that is where the brilliant minds go)?

    I have a neurologic disorder that was out of whack adn the doctor I was seeing didn't listen to me at all. I was able to self-refer my self to a center at Baylor College of Medicine (the best research center in TX) and finally get support and answers. My husband was misdiagnosed with everything from anxiety problems to Strep virus in his stomach to hepatitis before a surgeon stepped in and got him one of the best gastroenterologists in Austin. Only then was he properly diagnosed with Crohn's disease and given care that has really improved his quality of life.

    Lorelei, her sister and parents deserve so much more than "we don't know". (((HUGS and PRAYERS)))
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  2. #17
    Join Date
    Feb 2006
    Location
    the foggy wetlands,los osos,ca
    Posts
    2,860
    My sister says things are a bit better this morning. Which is good. Lore was finally walking this morning even though she says her leg still hurts.
    Blessed are the flexible, for they shall not be bent out of shape.
    > Remember to appreciate all the different people in your life!

  3. #18
    Join Date
    Jun 2005
    Location
    Colorado
    Posts
    1,627
    I am sorry to hear about this. I will keep them in my thoughts.

  4. #19
    Join Date
    May 2007
    Location
    Skagit County, Washington
    Posts
    1,306
    Brandi: I can't believe that this is still going on. I hope the best for her, and am glad that at least she is home and better.

    I think AggieAma has a good point -- keep searching for someone who can find the answers. Don't stop until you have them. Otherwise, you don't even know what you are fighting. So scary.

    They (and you) are in my prayers.
    Jes
    Everyone Deserves a Lifetime

  5. #20
    Join Date
    Dec 2005
    Location
    around Seattle, WA
    Posts
    3,238
    ((((((((((Brandi, Lorelie, & Family)))))))))))

    and I second the motion from LLBloomer. Enough already!

    Warm fuzzies coming up from the Big Easy
    Beth

  6. #21
    Join Date
    Feb 2006
    Location
    the foggy wetlands,los osos,ca
    Posts
    2,860
    Lorelei is walking finally. But they want to run more tests on her. My sister just doesn't know what to do. She knows why they want to do this. But it has really damaged lorelei at this point. She is having behavior problems. And that is just a small part. her physical being is needing to be left alone. She has so many scars from all the tests. that has got to be hard on a little soul.
    I have been working on a very large sculpture so I haven't had a lot of computer time. Miss you all, miss riding my bike!
    Blessed are the flexible, for they shall not be bent out of shape.
    > Remember to appreciate all the different people in your life!

  7. #22
    Join Date
    Dec 2006
    Location
    Columbia River Gorge
    Posts
    3,565
    (((((((Hugs)))))))). Thinking about you, Lore and the family. Hoping for an answer soon. Hoping that Lore doesn't have to get needled, poked and prodded much more. Poor thing.
    Living life like there's no tomorrow.

    http://gorgebikefitter.com/


    2007 Look Dura Ace
    2010 Custom Tonic cross with discs, SRAM
    2012 Moots YBB 2 x 10 Shimano XTR
    2014 Soma B-Side SS

  8. #23
    Join Date
    Oct 2005
    Posts
    2,309
    Ohh Brandi! I just caught this. UGH!
    Huge hugs to all!
    There is an answer out there. I just know there is. I'll be praying that someone who has that answer comes into your life. That poor angel needs some relief!
    UGH!

  9. #24
    Join Date
    Feb 2007
    Location
    Oregon
    Posts
    1,131
    (((((((Brandi, Lorelei, and family)))))))))
    Healing vibes sent.

    I wonder if there is some type of medical forum, where you can list all her symptoms and others can get you leads if they sound similar to something they are going through.
    Everything in moderation, including moderation.

    2007 Rodriguez Adventure/B72
    2009 Masi Soulville Mixte/B18
    1997 Trek 820 Step-thru Xtracycle/B17

  10. #25
    Join Date
    Jul 2007
    Location
    foothills of the Ozarks aka Tornado Alley
    Posts
    4,193
    Quote Originally Posted by Brandi View Post
    Lorelei is walking finally. But they want to run more tests on her.
    Brandi, can your niece be seen by someone at Mayo Clinic? I'm so sorry she's having so much difficulty. I know your family needs answers.

  11. #26
    Join Date
    Feb 2006
    Location
    the foggy wetlands,los osos,ca
    Posts
    2,860
    You know my sister finally asked the Dr if there isn't some wonder Dr they could have come in and take a look at her. I guess there is in LA. It would be really nice to have answer's. All this guessing can wear you out.
    Thank you all again so much for your support. It really helps! Happy 4th.
    Blessed are the flexible, for they shall not be bent out of shape.
    > Remember to appreciate all the different people in your life!

 

 

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