Ehlers Danlos Syndrome

New information on EDS...

http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

Translation: So You Think You Might Have EDS

Migraines/severe headaches can be a symptom of EDS.

Cheryl

I was checked by Dr. Ws partner. No, even though many of the characteristics fit me.

I am going to look into this further in the near future here. I did some research online because this is a genetic thing. Recently, my sister has been having migraines more often, and so have 2 of her kids. The one girl, 12 years old, has the flexy-bendy joints that are illustrated. I have joint issues myself and have since I was about her age. It has always been chalked up to 'that is just the way I am'. Reading this information and adding in family history, also talking with my Mom and Sister, we are wondering. I am going to discuss the testing with My DR's if I can forgo the kids having to go thru it then all the better. Thanks for posting this, I will let you know if I have any results!

It can be tricky to diagnose. It often goes along with having Chiari Malformation.

That being said, I know many people who have EDS. Some of them were diagnosed by a geneticist. Just something to think about, if you want to explore the possibility of having EDS.

Cheryl

Thanks! My thought was to run it by my Neuro and my GP and see what they think. I say run it by, but by that I mean trying to find out who, how, and what is involved with the testing. My GP is really great about referrals, and has always been willing to even give me one without necessarily seeing me. For example, I had joint issues and instead of making an appt with him, I just called explained it and asked for a referral to an Ortho, and they just did it. I want to discuss it with him though and take the information I have with me. It is probably a negative, but I might as well throw it out there! I am really concerned with my neice and nephew, who are 12 and almost 8, starting to have migraines. The one is taking Tylenol w/codeine and Maxalt. That is why I am leaning toward a genetic thing. My sister has 3 kids, and, well...they all have different dads. With my Sister also having an increase in bad headaches and actual migraines, I just think that whatever this is, it is obviously coming from our genes! LOL