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?underlying connective tissue disorder

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by merylg, Oct 22, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr. Rodney Grahame in the UK is a world expert: http://www.uclh.nhs.uk/OurServices/Consultants/Pages/ProfRodneyGrahame.aspx

    Sushi
    merylg likes this.
  2. merylg

    merylg Senior Member

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    @ justy,
    Congenital heart issues occur in Loeys-Dietz Syndrome, as do gut issues. PDA is specifically mentioned here:

    http://www.ncbi.nlm.nih.gov/pubmed/22734312
    justy likes this.
  3. merylg

    merylg Senior Member

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    justy likes this.
  4. Gavman

    Gavman Senior Member

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    Meryl, I'm not sure tmg and glycine have the same benefits. Tmg is attached to three methyl groups, dmg to 2.
    As the standalone glycine as amino acid, I think is more likely to help with connective tissues outside methyl groups. I could be wrong but I found the collagen supplement was great for my flexibility while the tmg worked on my energy.
    merylg likes this.
  5. merylg

    merylg Senior Member

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  6. merylg

    merylg Senior Member

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    Just to raise awareness of Aortic Aneurysms, as my father had one & the tendency can run in families. People with genetic connective tissue disorders are also susceptible. Good diagrams & info here:

    http://www.aorta.yale.edu/disease/index.aspx
  7. merylg

    merylg Senior Member

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  8. taniaaust1

    taniaaust1 Senior Member

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    Ahh flat feet. I hadnt thought of that one in relation to connective tissue disorders before .. I got diagnosed with that by a podiiatrist when younger and he prescribed shoe inserts due to the foot pain it would give me (when in my 20s. I guess that is another thing I can add to the few things in which a specialist told me he thought showed I had some connective tissue disorder going on. (in my case Im not overly flexible...but rather have other issues with go with connective tissue disorders eg abnormal healing reaction when I got a frozen shoulder and a prolapse.

    I suspect thou I dont have EDS, I think I may be carrying the gene for it due to daughter fitting EDS criteria.
    merylg likes this.
  9. merylg

    merylg Senior Member

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  10. Sea

    Sea Senior Member

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    merylg did you have your appointment with the geneticist in March? Did anything come from it?
  11. merylg

    merylg Senior Member

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    Sea disappointing really, but a start! There wasn't time in one visit to address all my concerns & felt the whole process was inadequate. At the end they (Geneticist & counsellor) said they would be happy to collect blood & dispatch it to US for testing, at my expense. They actually said "Wait a year and it will all be much cheaper"...They were also happy to review other family members at any time.

    I see a different clinic soon (Mitochondrial), so will probably discuss it all with the Prof there. I may also go to a more major hospital genetic clinic for another opinion. If I can narrow down what is worth testing for, then it could be affordable.
    Sea likes this.
  12. WillowJ

    WillowJ Senior Member

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    this seems like something they should be able to help you more with. I hope you're able to get better help. glad you've made a start.
    merylg likes this.
  13. John H Wolfe

    John H Wolfe Senior Member

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    Interesting. This is pretty much the basis for Dr. Rowe's current working hypothesis as well as my own:

    1) Aetiology: ME/CFS is the descriptor applied to the symptomatological manifestation of advanced Neural Hyper-Sensitivity Syndrome (NHSS), typically arising among people with:
    • Neurodynamic restriction e.g. dorsal defect, hypermobility, connective tissue disorder
      • A Hyper-inflammatory predisposition e.g. allergies, sensitivities, asthma, eczema
    merylg likes this.
  14. merylg

    merylg Senior Member

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  15. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    Dr Byron Hyde in his book mentions the link between ME and connective tissue probs, esp EDS3.
    Professor Rodney Grahame mentioned above is Europes top EDS person, he works in UCH London.
    You can be genetically tested in the UK for four out of 5 types od EDS. EDS3 is the same as hypermobility syndrome, but they have not yet found the gene for it.

    When I saw him he said I had marfan type features but I am not tall. I just have big hands and feet.
    Flat feet can be a symptom of EDS3, as can stretch marks, high arch palate in mouth, POTS and gastroparesis.
    Allyson and merylg like this.
  16. Allyson

    Allyson *****

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    long limbs and fingers are definitely associated with Marfan's Alex....I thin there I stll much research to be done into CTDs so more will become know about them soon, I hope.

    cheers,



    Ally
  17. Allyson

    Allyson *****

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    you are quite right Angel - also IBS and reflux and fatigue are ES symptoms....in fact as many symptoms as ME has it seems

    this article is useful with more symptoms and pics


    http://downloads.hindawi.com/journals/isrn.dermatology/2012/751768.pdf


    Ally

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