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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index


I'm new to this forum. I'd like to tell my story, if you'll bear with me. I have a b12 deficiency and a chiari malformation.I've been reading some older posts, and basically my situation sounds a lot like Scout's. If you see this Scout, please respond! Anyway, the symptoms for b12 and chiari are very similar and the doctors can't agree as to whether it's primarily the b12 or the chiari that's causing my symptoms.

I give myself b12 injections every 2 weeks. The b12 definitely does help, but it's more like it has a positive effect on my chiari symptoms. It's as if it helps stabilize them. This would make sense to me, as b12 is crucial for a healthy nervous system. My b12 has been at a good level (over 400) for a year, or so now, so shouldn't technically be causing any decline in my health....but I still have a bunch of symptoms and some that are slowly getting worse. If it was just b12, I don't think my symptoms should still be getting worse, especially so long after starting the replacement therapy. My hematologist thinks the symptoms I have are from the chiari. My neurologist thinks the chiari is responsible for some of my things (dizziness and balance, cognitive difficulties, headaches, neck pain), but not for the nerve stuff (pins and needles, numbness, muscle twitching, funny bone type pain). Other things, like swallowing difficulties, he's not sure about. Another doctor thinks.......well, you get the picture. Lots of opinions!

As for the chiari, it's about 6mm. I have no syrinx. The cine mri showed that my csf flow was good, just that it's too fast in one area. Oh, and I guess I have a slight scoliosis, too.

Thanks for reading!

Jenny AKA flightgirl

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