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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. Sharon Lang

    Sharon Lang

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    Chiari patients need both a decompression and a fusion if they have coexisting EDS. Chiari institute in great neck y found the correlation S to why some patients did not do well after the decompression alone. My guess is this person you knew had both and needed the fusion as well.
  2. Sharon Lang

    Sharon Lang

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    Rosner has just doing the decompression. Both are needed in EDS patients to stabilize the cervical cranial instability and top the progression....
  3. Allyson

    Allyson *****

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    when I phoned my gentics clinic for an appointment I asked if everyone who is hypermobile has EDS; she said no, there are several different connective tissue disorders.

    Not sure it that throws any light on it Mish Mash.


    Also someone wrote this in a PM so I ansewr it here with permission::

    i don't have a definate diagnosis yet but if i was a betting girl my money would be with you! seeing doc who specialises in chronic health issues...) in july (booked in jan - this was the earliest i could get in) so am going to ask her and try and get a referral.

    My answer -

    Several people have had trouble getting referred by thier GPs - you just need any GP referral; so I suggest putting your foot down in a nice way; even my lovely GP was hesitant about the genetics referral and suggested Iphone them first.

    I did they were lovely and most interested to see me so she happily wrote the referral.

    THIS is our right to be referred o relevant specialists for THEIR opinions. GPs can't know eveything in this complex field. It is only when we see the clinics at large public hospitals that are affiliated with universities that we get counted and - incidentally the best treatment - from people up with the latest research.

    There is no need to wait 3 months to get the referral - any GP can and should refer you. there is a further to see most specialistsafter you have the referral.

     

    This is what I and many others went through to t get an ME/cfs referral - 20 years of "you don't need it, you look fine to me".

     

    And that adds to the problem of slow diagnoses. so no-one knows we are ill so no-one does any research.

     

    Finally 2 specialists diagnosed me with it after I read enough books and looked enough on the internet and said to my doc - Look, I am SURE I have this disease and asked for a referral to a specific doctor for their opinion.

     

    I took the number and name with me so all she had to do was write a brief note and fax it to them.

    I do suggest you do this as it saves them time and effotr; also they know there is someone who specialises in that field so it is a valid option.
    Sharon Lang likes this.
  4. Allyson

    Allyson *****

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    According to EDNF now ALL types need to be tested as not only the vacular form can be life - threatening as formerly believed. ( Makes sense as so few were diagnosed who whould know how many died??)

    When I rang to make my genetics cliinc appt they asked me a few questions then immediately booked me in for a cardiac ultrasound even before seeing me and I am not vascular type but type 3 .
    Sharon Lang likes this.
  5. Allyson

    Allyson *****

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    I unedersrtand the ypes are bing re- classified and there may be 10 types now Sharon;
    My point about the hypermobility term is that you do NOT heed to be hypermobile at all to have EDS
    SOme people are very stiff and still have it..

    PS I kindly note you seem to share my dyspraxia of bad typing - that is an EDS symptom too - really !
  6. Sharon Lang

    Sharon Lang

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    It's not a causation issue. There are overlapping symptoms. Some people may have both. Some may have been misdiagnoses.
  7. Sharon Lang

    Sharon Lang

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    I am type, 1 and 11 as well as 111. A rheumatologist can also diagnose hyper mobility type. Bring literature on Beighton scale..
  8. Sharon Lang

    Sharon Lang

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    Yes, I agree with you. I have grand mal seizures and that affects the neurological issues as well....
    Allyson likes this.
  9. Sharon Lang

    Sharon Lang

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  10. Sharon Lang

    Sharon Lang

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    Early diagnosis is key in preventing the exacerbation of the afflicted body's progression towards premature deterioration and ultimate enhancement of the patient's lifespan and overall quality of life.

    Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type. An unusually large range of joint movement (hypermobility) occurs with most forms of EDS, particularly the hypermobility type.

    Infants with hypermobile joints often appear to have weak muscle tone, which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in infants with the arthrochalasia type of Ehlers-Danlos syndrome.

    Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars. The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles. Extra (redundant) folds of skin may be present as affected children get older.

    Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably, causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb) during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe, progressive curvature of the spine that can interfere with breathing.

    See Ehlers Danlos Syndrome -Morphopedics for more great information regarding description, anatomy, incidence/prevalence, clinical presenation of all types, potential etiologies, diagnostic tests, and conservative treatments.
    Ehlers Danlos Syndrome: Signs and Symptoms


    Btw, I have low b12 am not a vegetarian...
    Totally agree that wiki is not comprehensive enough...
  11. Sharon Lang

    Sharon Lang

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    I respectfully disagree. The evidence shows,there is not necessarily a cause but a link.
    MishMash likes this.
  12. Sharon Lang

    Sharon Lang

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  13. Sharon Lang

    Sharon Lang

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    http://www.ednf.org/images/2011conference/Handouts/EDNF_2011_Rowe_Fatigue.pptxSymptoms Of Orthostatic Intolerance: Lightheadedness, Dyspnea, Syncope, Chest Discomfort, Diminished concentration, Palpitations, Headache, Tremulousness, Blurred vision, Anxiety, Fatigue, Nausea, Exercise intolerance, Nocturia Working hypothesis: Connective tissue laxity in blood vessels allows increased vascular compliance, promotes excessive pooling during upright posture, leading to diminished blood return to the heart, and thus to OI symptoms (Rowe PC, et al. J Pediatr 1999;135:494-9) Chronic Fatigue in EDS [Rowe] (http://bit.ly/HQDNwk)
    Allyson likes this.
  14. Sharon Lang

    Sharon Lang

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    Symptoms Of Orthostatic Intolerance: Lightheadedness, Dyspnea, Syncope, Chest Discomfort, Diminished concentration, Palpitations, Headache, Tremulousness, Blurred vision, Anxiety, Fatigue, Nausea, Exercise intolerance, Nocturia
    Working hypothesis: Connective tissue laxity in blood vessels allows increased vascular compliance, promotes excessive pooling during upright posture, leading to diminished blood return to the heart, and thus to OI symptoms (Rowe PC, et al. J Pediatr 1999;135:494-9)
    Chronic Fatigue in EDS [Rowe] (http://bit.ly/HQDNwk)
    • 273 patients with EDS
  15. Allyson

    Allyson *****

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    Several people have had trouble getting referred by thier GPs - you just need any GP referral; so if anyone as troubleI suggest putting your foot down in a nice way; even my lovely GP was hesitant about the genetics referral and suggested I rang them first.

     

    I did they were lovely and most interested to see me so she happily wrote the referral.

     

    THIS is our right to be referred o relevant specialists for THEIR opinions. GPs can't know eveything in this complex field. It is only when we see the clinics at large public hospitals that are affiliated with universities that we get counted and from people up with the latest research.

     

    There is no need to wait 3 months to get the referral - any GP can and should refer you. there is a further to see most specialistsafter you have the referral.

     

    This is what I and many others went through to t get an ME/cfs referral - 20 years of "you don't need it, you look fine to me".

     

    And that adds to the problem of slow diagnoses. so no-one knows we are ill so no-one does any research....viscious circle.

     

    Finally 2 specialists diagnosed me with it after I read enough books and looked enough on the internet and said to my doc - Look, I am SURE I have this disease and asked for a referral to a specific doctor for their opinion.

     

    I took the number and name with me so all she had to do was write a brief note and fax it to them.

    I do suggest you do this as it saves them time and effort; also they know there is someone who specialises in that field so it is a valid option.
  16. MishMash

    MishMash *****

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    One of the popular treatments nowadays for fibro is Ketamine infusions. Ketamine is a anesthesia which was found to have brain rebooting properties. This was first discovered in severe depression patients, who felt instant relief from symptoms. It was later tried out on certain pain patients. The relief from RSD pain was almost instantaneous, and sometimes long lasting.

    One of the doctors heavily involved in this treatment is Dr. Kirkpatrick in Tampa, Florida. He puts up videos of interviews of all his patients-- before and after. I thought this particular one was quite interesting, because the patient himself is a FM sufferer, and also a medical doctor.

    Please take note of how the patient sits. He always tucks his legs up underneath him, as a normal sitting posture. Very strange for guys to do this. This tends to be a chick thing. Also, when he is not sitting on his legs, his feet are stretched back wrapped behind the chair.

    To me, this patient clearly has obvious blood-pooling in his lower extremities. Which is probably linked to some kind of connective tissue disorder. It is pretty striking seeing his behavior. More anecdotal evidence, for me anyway, that ME/FM and EDS are inextricably bound. Incidentally, he underwent the Kettamine infusions and claims to have benefitted.



    Sharon Lang and Allyson like this.
  17. Allyson

    Allyson *****

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    Interesting thanks Mishmash and especially the fact aht he says he is a doctore and they alll ued to roll their eyes before seeing a FM patient as they knw this would be whiny helpless person
    This is sad as he is evidently recently trained so this is STILL going on.


    My specialist said he "used to be skeptical" but after he saw enough people saying the same thing he started to believe..
    How many wil it take til they all believe?

    Also the fact aht he was extremely active prior to getting sick - I wal like that tooa nd I know many others were too and I would never sit around wathcing tv or chatting to friends. I now think that is due to a dislike of stasis and a need to keep moving to get the blood moving.
    in other works you choose a very active lifestyle for a long as you cna ... then at some point it catches up and you crash out - maybe that i what they used to call burn out??.

    so sorry for my bad typing dyspraxia - i do edit but it is still bad; my posiition does not help.
    MishMash likes this.
  18. Allyson

    Allyson *****

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    I always feel great just after a general anasthetic - I bet it works as a total muscle relaxant so effects will be short term

    Massage does the same to a lesser extent.
  19. Allyson

    Allyson *****

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    thanks for that Sushi.. that is hte think I like aboutthe EDS theroy - I can cleary understand it and remeberit, it explains most of my symptms to my satifaction - which nothing else does, and On that priciple I can now predict wwhen i am going to crash and learn how to aoid/limit it.

    Peripherally related I see a major sport wear company here - Skins - has stared prooting compression clothinsg ans asying it is helping athletic performance - presumably on the same priciples - iincreased blood supply or imporved cirulation - same thing is said to help jetlag that we gt so badly and prevent the DVTs some are getting now from Flying - high altitude - depressurisation , dehydration, heat and sitting upright for many hours while not moving -the perfect recipe for a crash!
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I checked with a representative with Skins (it is international) and they sent me the compression levels for their clothing. It is fairly low and probably not the best choice for the type of compression we need. They said that all their garments had this same compression.

    Here is what they wrote:

    -Ankles: 20 +/- 3 mmHg
    -Calves: 18 +/- 3 mmHg
    -Lower Thigh: 15 +/- 2.5 mmHg
    -Upper Thigh: 9 +/- 2 mmHg

    Too bad, as their tights look very comfortable.

    Best.
    Sushi
    Allyson likes this.

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