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Hi everyone.

This is my first experiences with support groups.
Earlier this year I received a confirmed diagnosis of atypical NBIA.
A couple of months ago I was notified that my DNA revealed I do not have NBIA. It is a neuro degenerative disease but they are not sure which one.
Having been in the hospital and undergone extensive testing I have decided to step off the merry go round at least for now - no more testing.
I am wondering if anyone else is in a similar circumstance with diagnosed neuro degeneration.

Hello Lonepine: Welcome to NeuroTalk! :welcome_sign: I hope you find the time you spend here to be of benefit. :Grin-Nod:

I'm sorry I cannot comment with regard to your condition. :Noooo: You might want to consider re-posting this in one of the other forums here on NT. I'm not sure which one would be the most applicable. :Scratch-Head: You can look through the list of forums & see what you think. One option might be the General Health Conditions and Rare Disorders forum:

http://www.neurotalk.org/forum2/

Perhaps other members, here on NT, may have other suggestions. :Good-Luck: :)