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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. MishMash

    MishMash *****

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    Justy,
    Permeability of your BBB or gut or mucosal barriers might still be an issue. Even if you technically don't have EDS. You wouldn't have to have overtly weak tissues, hypermobile joints. These issues would fall under connective tissue disorders. Weak tissues could be anywhere in your bodey. There is a major controversy about blood hypoperfusion to the brain as a reason for MS. There are some patients who swear angioplasty of the jugular veins has reversed their conditions. We shall see..
    Allyson likes this.
  2. alex3619

    alex3619 Senior Member

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    justy A lot of people are not aware that alcohol activates a lot of pro-inflammatory hormones. The mechanism is via a release of arachidonic acid from the cell membranes in the presence of alcohol. These molecules are immediately converted to hormones, many of which cause inflammation and pain. This can be masked by the numbing effect of alcohol, but I suspect that in us the problem is magnified. Which mix of hormones are produced would depend on a given persons individual chemistry, and that would vary tissue by tissue. While there are many theories of alcohol poisoning, it is drugs that stop this arachidonic acid chemistry that prevent death from alcohol poisoning.

    Just for the general discussion, as I said to someone recently I have the flexibility of an average garden gnome. However I have huge hands. One of my sisters is hyperflexible. My mother had huge issues with varicose veins, requiring surgery. Is there a genetic link? I don't know for sure, but I can't rule out the possibility.
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks Alex,

    All good points. Speaking as one of those with EDs, I can respond from experience and testing but I'll leave the theory to you! ;)

    So EDs is something I inherited and, yes, there were subtle symptoms all my life, but extreme OI came virtually overnight--not in my case from a virus or acute illness (though I am postitive for most of the suspect viruses and pathogens, so somewhere they were undermining the "terrain"--but after a week of extreme physical activity. Maybe glutathione took a plunge, maybe....?

    I did have high elastase, but that doesn't seem to be related to EDs because it is common in "non_EDs patients as well, and mine normalized with treatment (GcMAF, Nexavir, LDN...).

    Another interesting thing in my case, is that vagus nerve dysfunction is closely related to my level of OI. My TTT "with frills" showed vagus nerve dysfunction along with many other things. For the last couple months I have been seeing a visceral therapist and without telling her anything, she said that my vagus nerve was not functioning well. After several treatments, my OI is improved--for a couple of days after a treatment it is gone. Slowly the effect seems to be "holding" longer.

    Permeable BBB related to connective tissue problems is also very interesting. And yesterday I posted something from a sinus site, saying that connective tissue may be related to sinus problems--one of our common bugaboos.

    So yes, I'd say a big predisposing factor for those with EDs, but "causation" seems a lot more complex.

    Sushi
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  4. Allyson

    Allyson *****

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    HI Justy,

    No iI have never heard of that pain in legs after alcohol sorry
    I feel generally bad after drinking alcohol - even a glass of wine - which I now believe is due to the vasodilation.
    If i drink wine together with food with msg i get a weird numb feeling in my legs but i would not call it pain,
    Can you describe the pain more and say where it is ....or would that involve another drink ...
    he he?
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  5. Allyson

    Allyson *****

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    Hey Alex,
    Thanks indeed.
    I have no hypermobile joints or stretchy skin either but the genetic link... esp in first degree relatives .. was a MAJOR part of my diagnosis. I have always been really stiff and inflexible so dismissed this as not applying to me at first too. Bu t so many of my family members can touch their nose with their tongue, I have mild varicose veins on the left le whidhis the side all my clumsiness started showing in first.

    If I did not thing my diagnosis fitted I would say so but all the logical treaments based on it ...eg avoiding heat, and symptoms like disliking standing etc really help me as guidleines when I follow them so I am pretty sure it is right for me.

    Where do the huge hands fit the picture?
    MishMash likes this.
  6. Allyson

    Allyson *****

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    On this point,

    My neurologist queried CSF leaks for me and I note EDS can cause the meninges to suffer constant small tears which would lead to leaks. Apparently it can be sometimes deteced on MRI wiht contrast; I have had one and am awaiting the results.
    Cheers
  7. Allyson

    Allyson *****

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    On reading this i realised two other symptoms I have .. flat feet ( which my father also had) and rice paper scarring I think it is called; I have a couple of cut that healed up with a large soft white area of skin in them and read that is a symptom of EDS... I always thought the one on my knee was because I should have had is sutured that it had such a wide scar for no apparent reason, but it could be this.
    )Why do flat feet disqualify you form the army does anyone know?... Is that even true?)
  8. Allyson

    Allyson *****

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    [quote="alex3619,
    If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown?
    Bye, Alex[/quote]

    I like the logic of your sigature (above) Alex, and it has occured to me that there is also no test for a hangover... which thus cannot be objectively shown either...., but everyone believes hangovers are real.
  9. Allyson

    Allyson *****

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    Thanks for this Jusy, so are you saying that if you went for a slow stroll ...of say about an hour.... on a hot day... and that was all you did that day...that would not cause you any ill effects at all in subsequent days?
    Do you dread queues?

    One this I do is walk my cats ... for me that means a few steps then waiting for five minutes while they stop and explore a garden or have a wash. I can feel when i do this in the evening that it is not good for me - better to walk briskly I think. or better , cycle. This mornin I took Gracie for a walk before breakfast and I had woken up feeling OK but afterwards went back to bed with a headache.... I realised that walking just after a whole night without drinking any water is not a good idea; would be better to have breakfast and drink, wait a while to digest (blood goes to the stomach after the meal) , then take the walk.

    The very worst thing for me is driving ( ie sitting up and still) in the heat; My halter monitor test showed my pulse was elevated in the supermarket .... my specialist observed that thisis a bad situation for us as you are up and moving slowly and stopping a lot, then face a queue at the end.

    Cheers,
    Ally
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  10. alex3619

    alex3619 Senior Member

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    I came across some speculation somewhere on EDS that large hands and feet might be a sign. I don't have a link, and I do not know how accurate it is, I just mentioned it in case it sparked some idea in someone. The more ideas we look at, the higher the chance we might find something interesting.

    Sometimes in supermarkets I have been so very tempted to abandon my groceries and just go home. Now I have shopping help, and it definitely makes life more tolerable.
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  11. Allyson

    Allyson *****

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    Hey Justy,

    no you do not need to have any of those major symptoms. I do not either. There is a continuum apparently with those at the extreme who DO exhibit those evident symptoms and those in the middle like me ... and if it is a bell curve we are likely to be in the majority....who JUST have stretchy veins and gut issues and probably meningeal weakness,,,,, and the consequences of those which are manyfold but ....as we all know ...difficult to prove or diagnose.
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  12. Allyson

    Allyson *****

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    Hey great idea Alex, I usually up having either a fight or a meltdown in the queue if i have to wait at all ... or shamelessly try to queue-jump lol.. Now I know why.

    I try to avoid peak hours.. well I avoid them all costs , I will leave and go home rather than queu for long time. Shopping help is a great idea; i really must do that as it is such a major problem I am now realising.
  13. Allyson

    Allyson *****

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    quote]

    I quite agree Alex; I know large feet and hands are a sign of Acromegaly .. but i think they grow bigger over time, don't start out like that... I think that is the name.. a pituitary disorder causing excess growth hormone from memory, but it usually involves a larger jaw too I think.
  14. Allyson

    Allyson *****

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    Thanks, interesting Alex, indeed; would you have the link or reference for the Vance Spence...article please. I iwll send it to my specialist who is kindly taking a great interest in this topic.
  15. Allyson

    Allyson *****

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    thanks for that Merylg ;
    I not ethey mention in ther medical geneticists who cdan isolate specific genes involve in eash disease: I wonder if anyone is looking at PWME for that possililty - we do not know if it is genetic ofr knot but thsat would solve that issue.
    thanks again,
    Ally
  16. MishMash

    MishMash *****

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    EDS activist and researcher Dr. Diana ran a study to check people for abnormal stitching of the skull during infancy (I think that is the gist of it). She was looking to see if EDS people had "hydrocephalus" as infants, which lead to related illnesses later in life. She has surmised that the EDS leads to blocked up CSF in the brain. The drainage conduits are physically obstructed. She wanted to see if the big-headed babies were more likely to have dysautonomia as adults.

    Not sure how this fits in the EDS constellation of symptoms, seeing as how leaks of CSF are also common in EDS patients. I guess both leaks and blockages could happen. Maybe excess pressure causes the tears, leaks?

    http://clinicaltrials.gov/ct2/show/NCT01367977?term=total eye care&rank=6

    Also, Dr. Diana is a practicing optometrist (she and her daughter are both EDS patients) and she has become an amateur researcher of EDS. Her training and equipment allow her to look into the eyeballs of patients. A tool used in the field of optometry, the "OPTO MAP" allowed her to peer into the veins, showing stenosis and not enough blood supply to the brain. I wonder how her study worked out.

    http://www.totaleyecare.com/Vascula...-Cerebrospinal-Venous-Insufficiency-CCSVI.htm
    Study Description

    Chronic Cerebrospinal Venous Insufficiency (CCSVI) has been proposed as the cause of numerous neurodegenerative diseases of the brain. CCSVI is the result of poor drainage of blood (and cerebral spinal fluid to some degree) from weakened or stenotic veins usually located in the cervical area (most notably the internal jugular veins). Although current focus and treatment of CCSVI is on multiple sclerosis, CCSVI has also been implicated as a potential cause of Alzheimer's Disease and Parkinson's Disease. Additionally, patients with Ehlers-Danlos Syndrome (EDS) -- a disorder of connective tissue -- are more prone to developing multiple sclerosis than the general population. Many EDS patients are known to have weakened and abnormal blood vessels and 40 - 70% of EDS patients develop autonomic dysfunction in addition to numerous other symptoms found in patients with CCSVI. In the small subset of EDS and multiple sclerosis patients seen at Total Eye Care, the investigators have noticed a vascular irregularity (using the optomap® and examining the results under high magnification) which offers credence to the theory of CCSVI. Such objective data has been elusive, excepting for fMRI (functional MRI), ultrasound (to a limited degree) and the results of venous angioplasty. Current treatment of CCSVI involves the ballooning and sometimes stenting, of abnormally stenosed veins. The treatment of CCSVI offers hope to many patients suffering from multiple sclerosis.
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  17. Allyson

    Allyson *****

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    Thanks for that Ahimsa, yes i may have been careless with terminology.
    But also yes, it took may years for me to see the connection alas.


    But could I add the question: as anyone investigated to see if being upright - sitting or standing - may possibly cause ALL our problems. I reiterate my situation that when I lie down for long enough my symptoms entirely disappear, and when I stand up for long enough they come crashing back. I would like to know if anyone has studied this to see if say someone who lies in bed totally for say , 2 weeks and then does vigorous exercise in bed still gets PEM... from which we could conclude that the being upright causes sometihing to happen in our brains or elsewhere that eventually leads us to develping PEM.
    And to put it another way I think.. does being upright cause all our problems... another way of testing it too would be interesting.
  18. merylg

    merylg Senior Member

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    It would be worth seeing a Genetic Clinic at a major teaching hospital, as many mutations are now characterised. Would help in managing the condition.
    EDS Types 1 & 2 COL5A1, COL5A2, COL1A1
    Type 3 COL3A1, TNXB
    Type 4 COL3A1
    Kyphoscoliosis PLOD1
    Type 7A & B COL1A1, COL1A2
    Type 7C ADAMTS2

    http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome

    Marfan Syndrome FBN1

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

    Loeys-Dietz Syndrome TGFBR1 & TGFBR2

    http://en.wikipedia.org/wiki/Loeys–Dietz_syndrome

    Homocystinuria CBS mutation
    (Can mimic symptoms of Marfan Syndrome)

    http://emedicine.medscape.com/article/1115062-clinical#a0217

    (There are many more genetic mutations/deletions affecting connective tissue, the above are just some common ones)
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  19. alex3619

    alex3619 Senior Member

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    You can get some of these for free from ResearchGate, though you need to get a free account. There are a few more articles as well.

    https://www.researchgate.net/public...ion_in_patients_with_chronic_fatigue_syndrome
    Low-grade inflammation and arterial wave reflection in patients with chronic fatigue syndrome.

    Vance A Spence, Gwen Kennedy, Jill J F Belch, Alexander Hill, Faisel Khan

    Vascular and Inflammatory Diseases Research Unit, Institute for Cardiovascular Research, Ninewells Hospital and Medical School, University of Dundee, Dundee DD1 9SY, Scotland, UK.
    Clinical Science (impact factor: 4.61). 04/2008; 114(8):561-6. DOI:10.1042/CS20070274


    https://www.researchgate.net/public...ion_of_patients_with_chronic_fatigue_syndrome
    Acetylcholine mediated vasodilatation in the microcirculation of patients with chronic fatigue syndrome.

    V A Spence, F Khan, G Kennedy, N C Abbot, J J F Belch
    Vascular Diseases Research Unit, University Department of Medicine, Ninewells Hospital & Medical School, Dundee DD1 9SY, UK.
    Prostaglandins Leukotrienes and Essential Fatty Acids (impact factor: 3.37). 05/2004; 70(4):403-7. DOI:10.1016/j.plefa.2003.12.016
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    But not all ME patients have OI, so even if that could be true for some, it would have to be a subset of ME patients.

    Also, how do you fit in the viral and bacterial infections that so many of us have, the abnormal immune function, the often sudden onset of OI that many report? Problems with connective tissue that increase with aging, do slow slowly, not overnight.

    Sushi
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