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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

At my wits end
Jun 21, 2008
So I've been dealing with a myriad of symptoms since last year and in the long road of testing found out that I have a Chiari I malformation of ~6mm. My first 2 neuros said they didn't believe that my issues were being caused by Chiari and treated me for nerve problems using drugs like Amitryptaline, Diazepam, Neurontin, and now Cymbalta. The most relief I have had has been from Diazepam + Ibuprofen but I can't take that at the doses needed for relief for long amounts of time. Some of my symptoms have gotten better which leads me to think that MAYBE it really isn't the Chiari. I've had/have:

Pressure/pain when bending/straining (had)
moderate numbness/weakness in hands and feet, mostly hands (had, is mild now)
tingling/crawling in scalp starting at base of head up and over to top (had)
fatigue (still have, horribly)
pain/irritation at base of skull.
Muscle tension in head/neck/back (have)

I also have some things that lead me to think it might not be Chiari after all and here is where I would like your opinions. [B][U]Does anyone else have:[/U][/B]

Cracking/crunching (very audible) of the neck when you tilt your head back and move it. (when I do this it feels like there is a warm "rush" in the base of my skull where the discomfort is, no actual relief though)
A "pulling" sensation in your back from your neck down into your lower back and legs when you tilt your head forward looking down.

I also feel kind of like I have restless leg all over my body if that makes sense. It's the best way I can describe it.

I've had MRIs of my head and C-spine, dozens of blood tests, nerve conduction studies, EKGs and have seen over a dozen docs now :( I can't even enjoy time with my two small sons because I am so exhausted all the time.

Any input on those other symptoms would be greatly appreciated. If I am to find a Chiari specialist I will have to travel out of state and before I do that, I want to rule out any other possibilities. Thanks so much all of you and I hope you all find your answers as well.

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