Hi all, I just figured I would update about my situation. I just talked to The Mayfield Chiari Center, and Dr. Ringer has ordered a Cine MRI to see if the Chiari is causing my problems. I will be doing a 4 hour each way road trip to Kentucky next monday(Hooray roadtrip!). I had a chance to see my Neurologust about a week and a half ago, and she was dumbfounded at the extent of small fiber nerve damage(1.1 nerve fibers per mm in my calf). After 18 vials of blood, there is no answers for why this is happening. She is preparing to call it idiopathic, even though I seem to be getting progressively worse. I’m not ready to give up yet, as I am only 21 with no diabetes or autoimmune. At least if the Chiari is causing this, it can be fixed! My body does not seem to like the gabapentin, my ankles swell up like I’m a pregnant woman! Hoping for the best, but preparing for the worst. The small fiber nerve damage is affecting my organs, so my heart seems to like to go out of rhythm often, which is terrifying. Still feeling down, but I’m glad I have you guys. Thanks for listening to my soap box!
Great news! I hope you like Dr. Ringer as much as I do! It was a five hour drive for me but it was so worth it! :)
Joe, I am so glad you are moving forward. I don’t blame you for the way you are feeling, but please keep hope alive and believe you will feel better in the future. I think you are assembling a great team to help you.
Hugs, jenn