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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. Allyson

    Allyson *****

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  2. Allyson

    Allyson *****

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  3. S.A.

    S.A.

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    Interesting links and discussion. My son was seen by geneticist at Wash U and given dxnosis of EDS but her treatment was PT not IM b12. She also wanted to just watch him for a year. During that year we saw an Integrative Medicine dr who did the NutrEval which showed massive b vitamin deficiency which also causes connective tissue laxity and several other probs given as EDS. Its interesting that some docs are treating EDS with b12 but some are just giving the EDS label without sufficient treatment. Also frustrating that the "geneticist" at Wash U did not actual genetic tests while my Integrative Med dr ordered genetic tests that revealed genetic inability to utilise b vitamins.
     
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  4. Allyson

    Allyson *****

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  5. Allyson

    Allyson *****

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    POTS tests at Mayo Clinic -POTS Is a mojor EDS symptom and thought to be the cause of the fatigue and muscle pain


     
    Last edited by a moderator: Mar 7, 2014
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    These are tests of the autonomic nervous system--not specifically of POTS.

    In my understanding, POTS or Dysautonomia related to EDS would not be coming from the autonomic nervous system but from collagen dysfunction.

    Sushi
     
  7. Allyson

    Allyson *****

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    could you explain how that difference works please Sushi?

    Allly
     
  8. Allyson

    Allyson *****

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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are many causes (known and unknown) for dysautonomia. There are brain connections, there are pathogen connections (killing pathogens has resolved dysautonomia for some here), there are connections with EDS (as a predisposing factor) but the most seems to be known about the connections with the autonomic nervous system and the brain.

    There is published evidence (no time to look for links) that peripheral norepinephrine receptors are damaged in a % of patients--this is probably why norepinephrine re-uptake inhibitors work for some. There are other studies showing other autonomic nervous system dysfunctions (vagus nerve dysfunction, etc).

    For some the low blood volume often seen in dysautonomia patients is coming from diabetes insipidus:

    http://forums.phoenixrising.me/inde...partial-diabetes-insipidus.15362/#post-249075

    On the other hand, for those with EDS, collagen dysfunction can be related to some aspects (but not all) of dysautonomia, in some patients. Many dysautonomia patients do not have EDS (and yes, they have been tested). Therefore, their dysautonomia is coming from one of the sources mentioned above, or some other source.

    The tests mentioned in post #1045 are measuring various aspects of dysautonomia in general--not specifically POTS or symptoms related to EDS.

    Best,
    Sushi
     
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  10. Allyson

    Allyson *****

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    There is a really good PowerPoint used during a CME talk on Dysautonomia by Dr. Heidi Collins at Memorial Hospital, South Bend, Indiana on February 26, 2014. I am unable to share ATM but it is on this fb link "People with People with Dysautonomia and Ehlers-Danlos Syndrome" group - currently second post down 8th March 2014

    https://www.facebook.com/groups/335489609876230/


    A
     
  11. Allyson

    Allyson *****

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    thanks Sushi - I strongly disagee with that statement above though - most people with dysautonomia still do not even know that they have dysautonomia though it seems as so few people have been tested for it - and most doctors do not even know what it is yet sadly.

    Best,

    Ally
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Depends on what country you are in.

    Sushi
     
  13. Allyson

    Allyson *****

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    again I disagree alas Sushi!
    I think most docs everywhere know very little about dysaoutonomia yet - I see people for all aroud the world on facebook being misdiagnosed or dismissed or mentioning docs who know nothing about it yet - fair enough it is falrly recent research and they cannot keep upwith everything in all fields - same for EDS - a (very hypermobile) woman was told she could not have it by a doctor in the USA the other day as she did not have blue eyes and blonde hair ! total rubbish!

    I think this shortcut should work
    https://www.facebook.com/download/460367147422964/Autonomic Dysfunction CME with Presenter Notes.ppt
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Allyson

    Sorry, your link doesn't work.

    Guess I've been lucky as all the docs I've encountered knew about dysautonomia and had at least a general idea on how to treat it--even Emergency Room doctors.

    Sushi

    P.S. I've sent you some Conversations--please have a look.
     
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  15. Allyson

    Allyson *****

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    yes you have - in that lecture slide show - which is very good - she mentions exactly that - that Dysautoomia is often not diagnosed

    also 3 page on the link between Dysautonomia and EDS in there..

    Ally
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sorry, but that link doesn't work.
     
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  17. Allyson

    Allyson *****

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    ta sorry ...it works for me... will repost later
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Maybe it is a Facebook group that you are a member of. If you are not a member, it won't work.

    Here is the message I get:
    Sorry, this page isn't available
     
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  19. Allyson

    Allyson *****

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  20. Allyson

    Allyson *****

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