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

[momcat]

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?

[Catty1]

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.

[Kirsten]

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.

[Kirsten]

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!

[Karen]

Grrrrr .... hope they get you an answer soon!

[momcat]

Hi Kirsten,
You've been on my mind as you wait for your test results. Any word yet? How are you feeling?

[Kirsten]

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.