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Thread: Ehlers-Danlos-Syndrome: Is this the answer to all the riddles?

  1. #1
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    Ehlers-Danlos-Syndrome: Is this the answer to all the riddles?

    A Facebook friend who is also a nurse suggested a while ago to ask my doctors to have me tested for this. It's a genetic disorder of the connective tissue, more precisely, of the collagen in the connective tissue. Some of the symptoms are a hypermobility of the joints (which I have), constant luxations and subluxations of various joints (I'm dealing with this all the time in my back!), kyphoscoliosis (which I have) and being prone to disc hernias (I already has several of them). It could also be responsible for the motility disorder of my bowels (which turned my life into hell on Earth) and the diverticulosis that I'm dealing with. So-called mouches volantes (eye floaters) are also a symptom of this disease, and so is the chronic venous insufficiency as well some other conditions such as fatigue, exhaustion, insomnia, etc... I'm dealing with all of this! There are 10 different types of this disease, and not all display the extreme elasticity of the skin which is so typical for Ehlers-Danlos (however, I've been told many times that my skin coped unusually well with the weight loss of 88 pounds a few years ago, which could have been another sign that something is wrong with my connective tissue).

    Even though I'm already dealing with other chronic diseases (Hashimoto's and a pituitary gland tumor), I always had the feeling there was still more than that, so Ehlers-Danlos could be the answer. My doctor, after doing some reseach on this rare condition, came to the same conclusion, and sent me to a dermatologist who took a biopsy on Thursday. Right now, the tissue is at the lab and I'm waiting for the result. Ehlers-Danlos would in fact explain a lot, on the other hand, there is no cure for it, and the fact that there is a high risk of developing cardiovascular problems such as a ruptured aorta is not so great. Well, we'll see, but if the test confirms Ehlers-Danlos, I need to see a cardiologist as soon as possible.

    BTW, my disability pension has now been extended to August 2015, for the time being. By the end of November, I'll go to hospital. It's an orthopedic clinic where they'll try to find out if there's more that can be done for my back. I will probably have to stay for a week and a half; and I hate leaving Luna and Lily alone. But it needs to be done.

  2. #2
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    It must be a relief to maybe have a diagnosis that might explain it all, at least for your own sanity! And maybe there are researchers working on finding way to help it, which would be good!
    I've Been Frosted

  3. #3
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    Quote Originally Posted by Karen View Post
    It must be a relief to maybe have a diagnosis that might explain it all, at least for your own sanity! And maybe there are researchers working on finding way to help it, which would be good!
    Yes, exactly; at least this would explain why I'm always feeling so ill and miserable and why I there are so many various symptoms and conditions...

  4. #4
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    Quote Originally Posted by Kirsten View Post
    Yes, exactly; at least this would explain why I'm always feeling so ill and miserable and why I there are so many various symptoms and conditions...
    Wow, I am glad that you may have an answer.

    I hope you don't have to wait long for the results to come back. Please let us know......

  5. #5
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    Yes, I will. I may get the results on Thursday, but I was told it could be necessary to send the tissue to another lab as the standard lab may not be qualified to do such rare tests. We'll see.

  6. #6
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    Kirsten,
    Please know that my thoughts and very best wishes are with you. I hope you get the answers you need. As always, you can count on my full support. As you can, please let us know how everything turns out?
    FIND A PURPOSE IN LIFE.....BE A BAD EXAMPLE

  7. #7
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    Hi, Kirsten:

    There are many online groups for different things - this one is called "Edsers" for people who have the syndrome: http://health.groups.yahoo.com/group/edsers/ You have to register for the group but it is free. Perhaps you can find one in the Yahoo groups in Germany if the diagnosis is confirmed. I have read a bit about it online in the last few minutes and it seems there are several different kinds.

    A couple of more possible resources:
    GERMANY

    Deutsche Ehlers-Danlos Iniziative e. V.
    Grauthoffweg 78
    D-33758 Schloss Holte-Stukenbrock
    Johanna et Gilles Guénot
    [email protected]
    Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).

    Deutsche Ehers-Danlos Initiative e.V.Cadolzburger Str. 119
    D-90766 Fuerth, Germany
    Telephone: 49-911-9733539
    Fax: 49-911-9733529
    E-mail: [email protected]



    My prayers are with you.
    "If opportunity doesn't knock, build a door." -- Milton Berle

  8. #8
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    Thanks for the links, Candace! I think I will contact one of these organizations in case Ehlers-Danlos will be confirmed.

    Called at the doctor's today but they still haven't gotten the results from the lab; need to call them again in Monday. I'll keep you updated.

  9. #9
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    Still no results, so frustrating! Now I was told to call again on Thursday.

    Another thing: My spinal problems are getting worse. Been dealing with sciatic nerve pain in both legs over the last couple of days, so I guess it's a good thing that I will soon be going to hospital. But I hate to leave the girls alone!

  10. #10
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    Grrrrr .... hope they get you an answer soon!
    I've Been Frosted

  11. #11
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    Hi Kirsten,
    You've been on my mind as you wait for your test results. Any word yet? How are you feeling?
    FIND A PURPOSE IN LIFE.....BE A BAD EXAMPLE

  12. #12
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    Quote Originally Posted by momcat View Post
    Hi Kirsten,
    You've been on my mind as you wait for your test results. Any word yet? How are you feeling?
    Still no results from the lab; now I'm supposed to call again in Monday.

    I'm not feeling so great these days, my bowels are bugging me a lot, and there are many ups and downs with my back. At least it's not constantly bad as it was before I had my surgeries. So I hope I can avoid another surgery at this point, but I'm dreading the thought of going to hospital.

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