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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson, could you please explain the connection with EDS--it isn't mentioned in the link you gave?

    Sushi
     
  2. Allyson

    Allyson *****

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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks for the link--interesting--but I don't see any mention of a connection between Roemheld Syndrome, (which seems to be quite specific) and EDS. This google document appears to be made from screen shots from a video, so that video needs to be referenced:



    Sushi
     
  4. Allyson

    Allyson *****

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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It looks like the same doc--but it is screen shots from a video. That is why I gave a link to the video--necessary for copyright.

    Best,
    Sushi
     
  6. CrochetChick

    CrochetChick Woof

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    I have only read the first page so someone may have already said this. Dr Hyde has said he is not sure if ME and EDS are the same illness, only because there just hasn't been enough research done. But he is of the belief that they may be the same thing. EDS can be triggered off by a virus as well.

    There needs to be research funded in this area. To be honest I wouldn't be surprised if it's in the same family.
     
    SickOfSickness, merylg and Allyson like this.
  7. Allyson

    Allyson *****

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    thanks Crochetchick!


    and thanks to Kathrynn Donovan for this

    Not sure how accurate this short article is - but interesting as she refers to muscle hypertonicity /spasticity in EDS as well as the hypermobility - and claims to have found a treatment that works.

    Also deals with gene testing and MTFHR gene

    http://www.mthfrheds.com/


    A
     
  8. Allyson

    Allyson *****

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  9. Esther12

    Esther12 Senior Member

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  10. Radio

    Radio *****

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    Liver disease Ehlers-Danlos connection?

    Extracellular matrix (ECM)

    http://en.wikipedia.org/wiki/Extracellular_matrix

    Tenascin-X deficiency is associated with Ehlers-Danlos syndrome.

    http://www.ncbi.nlm.nih.gov/pubmed/9288108

    Tenascin X Wiki
    http://en.wikipedia.org/wiki/Tenascin_X

    Glycoproteins

    http://en.wikipedia.org/wiki/Glycoprotein

    Glycosylation
    http://en.wikipedia.org/wiki/Glycosylation

    IGF-I Stimulation of Collagen Synthesis in Ehlers-Danlos Patients

    http://clinicaltrials.gov/show/NCT01446783

    Nonalcoholic fatty liver disease is associated with increased GHBP and reduced GH/IGF-I levels.
    http://www.ncbi.nlm.nih.gov/pubmed/22077984

    P-glycoprotein 1
    http://en.wikipedia.org/wiki/P-glycoprotein
    The Silent Liver Damage
    http://forums.phoenixrising.me/inde...man-health-pathways-to-modern-diseases.28937/
     
    Last edited: Mar 16, 2014
    merylg and Allyson like this.
  11. Allyson

    Allyson *****

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    thanks @Radio and @Esther12

    http://rheumatology.oxfordjournals.org/content/45/5/502.long

    The genetic basis of the joint hypermobility syndromes
    F. Malfait, A. J. Hakim1, A. De Paepe and R. Grahame1

    Rheumatologists have long considered that joint hypermobility is inherited. The familial aggregation is striking and the pattern of inheritance strongly points to an autosomal dominant mode. The first comprehensive description of symptomatic joint hypermobility in the rheumatological literature is attributed to Kirk, Ansell and Bywaters in 1967 [1]. They coined the term ‘hypermobility syndrome’ (HMS). Later, the recognition of the relatively benign prognosis of the HMS in terms of life-threatening complications led to the use of the term ‘benign joint hypermobility syndrome’ (BJHS) or latterly, the ‘joint hypermobility syndrome’ (JHS)....
     
    Last edited by a moderator: Mar 24, 2014
  12. Allyson

    Allyson *****

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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  14. Allyson

    Allyson *****

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    NEOPRENE BODY SUITS

    So Nasa has spent 20 million on making Neoprene body suits for astronauts

    these are light, cool and would allow a soldier wearing them to jump right over a car while carrying a heavy load

    so they sound like they might be useful for both POTS and EDS
    both for dysautonomia and joint issues

    Watch this space.

    Ally
     
  15. Allyson

    Allyson *****

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    From Dr Heidi Napora Collins - with thanks

    A few more links that are worth looking at:

    Direct Effect of Catecholamines on Bacterial Growth: A New Mechanism by Which Stress can Influence Digestive Health and Disease http://www.brainimmune.com/index.php?option=com_content&view=article&id=1594:direct-effect-of-catecholamines-on-bacterial-growth-and-intestinal-mucosabacteria-interactions-a-new-mechanism-by-which-stress-can-influence-digestive-health-and-disease&catid=56:reviews-and-viewpoints&Itemid=413

    Stress at the intestinal surface: catecholamines and mucosa-bacteria interactions. http://www.ncbi.nlm.nih.gov/pubmed?term=20941511


    Understanding and controlling the enteric nervous system. http://www.ncbi.nlm.nih.gov/pubmed?term=12473304


    Catecholamines and Vasopressin During Critical Illness http://medicina.iztacala.unam.mx/medicina/Catecholamines%20and%20Vasopressin%20During.pdf


    Enteric nervous system - Wikipedia, the free encyclopedia
    The enteric nervous system (ENS) or intrinsic nervous system is one of the main divisions of the autonomic nervous system and consists of a mesh-like system of neurons that governs the function of the gastrointestinal system.[1] The human gastrointestinal tract is made up of the stomach and intestin…
    http://en.wikipedia.org/wiki/Enteric_nervous_system



    A
     
    Last edited by a moderator: Mar 30, 2014
  16. Allyson

    Allyson *****

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    Another excellent earlier slide show of a talk from Dr Heidi Napora Collins who shares so generously of her excellent research!


    : http://tinyurl.com/bs9xvua

    A
     
  17. Allyson

    Allyson *****

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  18. Allyson

    Allyson *****

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  19. Countrygirl

    Countrygirl Senior Member

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    I am yet to read this thread which is of interest to me as a doctor-friend diagnosed me with EDS a few years ago, although it does not explain my ME symptoms.

    I have just read this paper, so in case it isn't already here I'll post it. Apologies if it is already pasted above.

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

     
    Allyson likes this.
  20. Allyson

    Allyson *****

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    Thanks for that Countrygirl


    Upright MRI s are now available in Australia

    http://www.medscans.com.au/bayside-standing-mri.html


    Ally
     

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