Chiari and EDS

[FlowerGirl123]

I recently went to see the Chiari specialist for the second time, and I didn't get very good news... but, one of the things that I asked of him... was if he could refer me to a geneticist so I could find out if I did have EDS or not. He then asked me if I have any type of double jointed-ness, which I have a bit, but he said "that doesn't seem like it would really be considered EDS" But, I have been told before, even on this website, to try and be tested to see if I have EDS because of things I have mentioned.

For instance, if I get cut... it takes forever and a day for that cut to heal... and I am allergic to everything, so I can't use any type of antibiotic ointments to help. When I had my decompression I had to have my staples removed early because I was having a reaction to those! I have extreme pain in my joints, etc etc... I haven't been tested, but I personally would say I have EDS but, all these doctors seem to think because I don't have a lot of "hyper mobility" that I can't possibly have it.

So, my question for those of you who do have EDS... or do know a lot about it, am I wrong to think I could possibly have EDS?? I will be seeing a geneticist soon to find out for sure, and not sure if there's anything else I should ask him/her to test me for as well... but, what are your thoughts? Am I just crazy?

[selmaS]

Hi...keep moving forward. I really did not think I had EDS because of the hypermobility issues/double jointed because I was not as loose as I expected someone with it to be...HOWEVER, I have learned that because my colegan is lax, my muscles are doing the job they are not...making them tighter then normal, making me feel less loose....BUT when someone is testing my ROM in legs, arms etc....it is a very laarge ROM, but if I try to move myself, I can not....not sure that made sense.....but anyway, I was DX'd with EDS.

Also I want to point out not everyone with EDS is hyper mobile....there are several types....so it is not the only thing to look at.

Is your geneticist a EDS specialist?

[FlowerGirl123]

Thank you for your response... and that's kinda what I thought from what I had read about EDS. The only thing I do know for sure, is... I have hyper mobility in my fingers... so bad that I had to stop playing the violin in middle school, because it was causing issues. I would say I forgot my violin at home, because I didn't want to deal with my fingers acting up when playing...

I am not sure if they are a specialist, they are in the same facility as my neurologist, I see him through Dr. Bath Green at the University of Miami. When I was referred, my referral letter says "EDS" on it. I don't know if anyone is familiar with any geneticist that may be there or not.

[selmaS]

Well I am not sure you are going to believe this, but I also played violin...and I had issues playing but had no idfea why, I finally quit playing in 9th grade and a few years ago while sitting at a piano I pressed down on the keys and looked at my fingers and a light went off as to my issues with not only fingering but trying to play in the different positions....like 4th....ugh.....so anyway I totally understand  this topic.

Dr Barth Green is a noted Chiari specialist so I am sure he vetted the Dr he is referring you to.