Newly diagnosed. Any advice?

[Mamax7]

I am 35yo female. As far back as I can remember I have had very odd neuro problems, but they really started rapidly effecting my life about 10 years ago. Every doctor has been left baffled. I have spent thousands of dollars (no insurance) on test after test. Blood work, MRI's. CT's, EEG's, etc. with nothing. I have tried several medications that did nothing. (Treated me for 'sensory seizures') Any diagnosis would have made me happy. MS, Lupus, whatever it was I would have been happy to know & start being properly treated. However, I gave up hope. I figured I would just have to live in misery forever and continue to take high doses of antidepressants and pain medications.
About 2 weeks ago I had an MRI for unrelated issues. They accidentally found Chiari. I am ecstatic as odd as that may sound! I feel like this is the answer to 10+ years of pure hell.
So, now what? I finally have great insurance, so that is no longer a road block. I want the best care. I want a doctor that truly understands and specializes in this disorder. I want as much info. as I can get my hands on. I want to know your experiences & advice.
My oddest symptom, amongst several others,  is a very odd smell & taste that lasts all day long. Nothing helps it go away. When I am having an episode I get very nauseas, confused, tired, and severe neck pain. This is what was called the sensory seizures.
I am in Washington state. Located between Portland OR & Seattle.
Thanks for reading. I look forward to hearing what you all have to share and becoming involved on my road to recovery!
THANK YOU!

[selmaS]

  Hi and welcome to the Chiari forum.

For many of us it took yrs to get a DX too....many Drs do not feel Chiari can cause symptoms...and do not bother to give the DX to patients....they consider it an incidental finding.

And ruling out Lupus, lymes, and MS is good in that Chiari symptom are similar to all of those....

We do have a list of Drs on here compiled by the members here, it is not a referral nor an endorsement...please us it as a tool to research the  Drs.....http://www.medhelp.org/health_pages/list?cid=186

A CINE MRI is suggested as it can  help determine if u have a CSF obstruction....and or over crowding.....u will also want to rule out ALL related conditions like syringomyelia, disk issues, ICP, POTS, and ehlers-danlos and sleep apnea.

Even vitamin levels can be helpful and thyroid testing....Chiari can affect all aspects of how our bodies work....and each of us is affected differently.....

Know u r not alone, we r here for u...

[desertstorm2009]

Hi there....
Today is a tough day for some of us who are in severe pain. But having said that I'm glad that you found your diagnosis. Selma has a list of Chiari specialist on here. Dr Oro in Colorado is considered among the best. If you haven't gotten an MRI Cine you may want to have your Dr order it as it shows any blockage of your cerebral spinal fluid flow. Research, read and share, it's the best thing you can do right now :-) Lisa