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Saying Hello

Hi Everyone,

I've been lurking in this forum for a little more than a week, and I think I'm ready to introduce myself and join the community. My name is Michele and I have been a medical mystery for quite a while  :)  I haven't received an official diagnosis of Chiari yet, but an MRI done for occasional fainting episodes showed, "mild cerebellar tonsil ectopia." No measurements were given, so I don't know how many millimeters or anything. I do know a diagnosis of Chiari would explain a lot. I have daily headaches, difficulty swallowing, scoliosis, fibromyalgia (joint pain, fatigue, and trouble sleeping), and my rheumatologist diagnosed me with "hypermobile joints", although he didn't explicitly say Ehlers Danlos. And I've had issues originating from the back of my head for as long as I can remember.

My doctor was concerned that some of the symptoms surrounding my fainting episodes might indicate seizures, so we're still waiting for my EEG results to come in before we come up with a game plan.

Anyway, thanks for reading!
- Michele
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620923 tn?1452915648
COMMUNITY LEADER

  HI and welcome to the Chiari  forum.

  I am glad u decided to join us, as we can offer u more info and support this way....lol...

I know u said u were DX with joint hyper mobility, but with mild scoliosis that indicates EDS and possible tethered cord....

Some with Chiari do have seizures, many do not....I had testing done yrs b4 my Chiari DX and I was found to not have ne major seizure disorder,,...but knowing some can be the result of Chiari, I know  look back with knowing what was going on all that time .

  I wanted to point out the Health Pages where u will find more info and a list of Drs to use to find the right one for u....u will want a true Chiari specialist....and testing to rule out ALL related conditions.

Know u r not alone : )
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