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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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    And for those interested

    Who's coming to the 2013 Dysautonomia Patient Conference (July 6th-8th in DC)? Road trip! Confirmed speakers so far include Dr. Peter Rowe from Johns Hopkins, Dr. Satish Raj from Vanderbilt, Dr. Kamal Chemali formerly of Cleveland Clinic and now at Sentara Neurology, Dr. Svetlana Blitshteyn from SUNY Buffalo, Dr. Hasan Abdallah from The Children's Heart Institute, Dr. Pradeep Chopra from Brown University, and Keynote Speaker, Susannah Cahalan. Ms. Cahalan is the a NY Times Bestselling author of Brain on Fire, a NY Post reporter, and she became an outstanding patient advocate after she surviving her own battle with anti-NDMA receptor encephalitis, a rare and deadly brain disorder known to cause autonomic dysfunction in 70% of its victims, most of whom are young women. Additional speakers will be added soon. You can learn more about the conference on the Dysautonomia International website: www.dysautonomiainternational.org/2013conference



    A
     
  2. Allyson

    Allyson *****

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  3. VeganMonkey

    VeganMonkey Senior Member

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    I'm not sure, but it's very concentrated form. But it doesn't work for everybody :(

    Thank you :)

    Allyson I had it indeed done for those reasons :) part of the whole process of being diagnosed. I don't think I have excess bleeding, I had surgery last year and the doctors didn't mention anything to me about extra bleeding so that was good. And for healing of the scars I taped them together for an extra long time (longer than recommended) because I was scared of getting more of those weird creepy 'popped open' scars with weird skin in it. I had trouble with my navel though, the skin started pulling towards the belly muscles so it looked deformed for a while. It looks like it's getting back to normal so I might not need get it reconstructed :)
    Also now they do stitches with a differ technique (where you cant even see the thread, its all hidden under the skin!) which helped for me. No bleeding after, all very good :)
     
    Allyson likes this.
  4. Allyson

    Allyson *****

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    I have a scar on my ankle; i scraped my self a bit deeply on a nail but it was neveer infected and i doon t think i put a band- aid on - if so onlly for a day or 2. I did it on good Friday so i know the date was 29th March 2013/ It is still now on 9th June 2013 not healed - it is red raised and highly evident. SO that is nearly 10 weeks. For many many weeks it looked like half a miniature corn cob sitting on my ankle as fara a shae and form go.

    Apparently the odd scarring is usually most evident on knees and lower legs for some reason.
    I have taken pics of it as the genticist was very interested in unusual scars when diagnosig EDS- even my appendix scar has white tissue in the middle of it, thought it is not as marked asa this on the and other ones my knee and calf.

    Excess bleeding is apparently a risk for EDSers - just something to look out for - my sister had a post-partum haemorrage for example .And dfor dental procedures we often need more local anaethesthic than usual.

    Yes keep us updated on the cardiac utrasound results and corneal transplant progress VM.

    Best,

    Ally
     
  5. pollycbr125

    pollycbr125 Senior Member

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    I have just been diagnosed with ehlers danlos syndrome I would advise anyone with an ME diagnosis who suspects thye have it to get tested suddenly my whole life from the moment I was born makes sense . It has taken me a lot of years of research looking at misdiagnosis to find a condition I thought fitted as soon as I saw pictures associated with ehlers danlos syndrome I was 99.9 % positive that was what I had . Sadly though I was checked by my local rheumatology department about 6/7 years ago and they should have picked it up then as looking back I passed the beighton scale then but obviously at the time I didnt know what the things they were asking me to do actually meant . Had I been correctly diagnosed I may never have deteriorated to the level I have now . I have been pretty much housebound for the last 3 years and can now barely walk so what the future holds I have no idea but im hopeing its not too late to turn things around . I am also suspected POTS syndrome but that needs verifying so my advise to anyone who thinks they are misdiagnosed is stick to your guns dont be fobbed off my doctors .
     
  6. newearth

    newearth

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    Just starting out here have not read all the thread sorry! pollycbr125 I'm sorry it took so long for you to get diagnosed and you are now as you are :( I hope for you its not too late....I have not been diagnosed as yet but am going to find out as I seem to have all the symptoms. I have only been diagnosed with fibromyalgia (amongst other things) and just have a feeling its not right, dont ask me why lol but yes have felt fobbed off for a long while now and am just getting worse as the time goes on.
     
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  7. VeganMonkey

    VeganMonkey Senior Member

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    pollycbr125 glad you got diagnosed :) now you know what it is at least. After many years of useless things with doctors and hospitals I'm on the right track too. First when I got my POTS diagnosis, that was really useful. We sure got to stick to our guns! Lucky my ME/CFS specialist is all supportive of me checking out if I have EDS. if I have it I'm going back to see him and have a good talk about it, maybe it can be helpful for some of his other patients. He's very innovative and always on the lookout for new angles to look at things, plus in contact with other ME/CFS specialists all over the world. Maybe we are onto something here and could be of some help for other people who are ill, I hope so :)

    Check for POTS, if you have it there are things to magnate it with :)
     
  8. pollycbr125

    pollycbr125 Senior Member

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    thanks newearth and welcome to the forum if you feel your diagnosis is incorect stick to your guns im so glad i have hopefully now ill get proper treatment better medication and pain control and more respect from health professionals
     
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  9. pollycbr125

    pollycbr125 Senior Member

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    yep he thinks I have pots so more tests are needed to confirm that and when ive relooked at pots it does all tie in with the symptoms
     
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  10. Allyson

    Allyson *****

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    Well i just got the results from my Red Cell Mass test which was done to measure blood volume

    It was a farily straightforward blood test over a couple of hours.


    "The finding demonstrate reduced plasma volume consistent with " stress polycythemia" or dehydration."

    The polycythemia was ruled out by the haematologist.

    Apart from my BP dropping 20 mm on standing - when it was finally measured correctly - this is the first test showing anything wrong .

    But something rather seriously wrong.

    And sure enough - I have low blood plasma volume - It is 2.48 litres - That is 30 mls per kg when the normal range is 40-50 mls per kg.

    Maybe IV therapy twice a week would get me mobile.?

    A
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    IV saline a couple of times a week helps many. It has a good effect, though of course not a "cure" but gives temporary symptom relief.

    Sushi
     
    ahimsa likes this.
  12. newearth

    newearth

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    Wow so whats the IV therapy? And did you have this test because of POTS?

    BTW I have been trying to catch up on this thread but its sooooo long lol so if I post something already asked I'm sorry!

    :redface:
     
  13. newearth

    newearth

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    Oh oops didnt see this before posting lol must be a bit slow!
     
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  14. newearth

    newearth

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    Ok so no POTS or OI for me but have other symptoms that seem to tie in..(and the specialist believes so too)..of course like most things we are all not a one fits all when it comes to disease, syndromes etc. To me its worth looking into....and not that there is necessarily anything that can help but having the dx I can at least then know what my limitations are and what I can actually DO, as I have been told and have read no end of times that I should exercise to help the pain and fatigue yet exercise renders me debilitated (and work for that matter) for the rest of the day and the next and am in sooooo much more pain. It seems to me that EDS does tie in with a lot of people who have ME/CFS and POTS/Dys and more research is being done I believe...I dont think it can be completely discounted. Also remember that there are many forms of EDS so again not a one size fits all...just my opinion :)
     
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  15. Allyson

    Allyson *****

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    No i missed that one too - THANKS sushi - sounds like just what i need!

    Hope my doc will prescribe it.

    I live neaar two major hospitals with large Emerg depts so could bgo there twice a wekk if they would do it - wow may be i could have a life then

    thanks again
     
  16. Allyson

    Allyson *****

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    Hi Newearth
    yes good point - the Wiki site say s ther is a lot of crossover between the types but most people seem to ignore this and want to put you in a set type.

    I am thinking of copying out the man posts from this thread to make a shorter more readable version without the chit chat as it has got so long which is now a deterrant to anyone interested - may be will post it on another ME forum

    Will let you know soon

    ALly
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    In the States hospital infusion centers are a better choice than Emergency Depts. I don't know if it is the same in Aust.

    Sushi
     
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  18. Allyson

    Allyson *****

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    HI Suhi and thanks -


    I have never heard of them here but will ask around.
    There is home visiting doctor service here but not all doctors can cauunlate ( insert an IV ) so unless i had a picc line or similar that would not be a regular option.

    If i had a picc or mpermantne lin i could just connect hte litre up myself each time.


    Do you know do people in the States get IV treatment at those infusion centres to treat ME/cfs?


    There is an IV acess support site on Fb but i think it is based in the states and is not very active so far.

    best and many thanks again,

    ALly
     
  19. Allyson

    Allyson *****

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    HI Mewearth

    I had the test because my red blood cell count was high and had been for a few months or longer

    My GP referred me to a haematologist to see hwat th cause was

    He bassically said some peopl ehave a high Red cell count - that might be you

    however i could be due also to lowblood volme so we can test for that if you like

    I had neard low blood volume was an issue in both ME and EDS so said would like to have that test - which was just a blood test really

    Glad i did now as it explains a lot - if you don't have enought blood in the rfirst place then standing up is going to be a problem - as is everything else like exercise, energy etc.


    cheers,

    Ally
     
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    Yes, many people in the States get a couple of saline IV's a week--often in a hospital infusion center, a doctor's office or, if they have picc line, with a home nurse.

    Sushi
     

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