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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Isaiah Austin Diagnosed with Marfan Syndrome, Ending Potential NBA Career

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Sushi, Jun 22, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson likes this.
  2. sueami

    sueami Senior Member

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    Front Range Colorado
    I'm so sorry to read this. My younger cousin has Marfan's, and has needed numerous heart and chest surgeries since the age of 5 to survive it.
     
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  3. Allyson

    Allyson *****

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    that is sad Sue - hope he is OK - Marfan's is related to Ehlers- Danlos so have you looked into that for yourself? Symptoms are very like ME symptoms.

    I think Naomi Campbell may have Marfan's too - many supermodels do and she is very bendy - looking - you can see her moving a lot even when she talks - like Diana Driscoll does. Visibly hypermobile.

    And the temper tantrums - alleged ! - would be consistent with POTS - which can make you feel angry/anxious due to the excess adrenaline.


    Ally
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
  5. sueami

    sueami Senior Member

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    I have not, yet, @Allyson but thank you for the heads' up. If current protocols don't generate big improvements or if I develop POTS, I will definitely remember about EDS as a possibility.

    I cannot, however, touch my tongue to my nose, nor do I have the classic heart-shaped face, so I'm hopeful my fix is an easier one.
     
  6. Allyson

    Allyson *****

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    no you do not need those symptoms - many do not have them.
    A friend just went for a Dx with a god specialist yesterday and even though she is only about 168 cm he suspected Marfan's - He measured her arm and leg to body ratio

    - apparently that counts more than just height now - she is also very thin and does not put on weight easily.

    Ally
     

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