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In Memorium
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Join Date: Sep 2006
Location: So Cali
Posts: 661
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In Memorium
Join Date: Sep 2006
Location: So Cali
Posts: 661
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BOB and ....
Folks, I think all the guidelines are good - but only as good as your doc, the facility, and the complexity of your PN.....
Its great and easy to get the standard bloodwork - but so often this is not the cause..... hopefully a competenent neruo will start there and electrical testing..... and if necessary biopsy.
Genetic testing is very difficult and expesive - as is paraneopoplastic- easily mis-diasnosed if no test has been developed yet for it - is really a wait and see just how bad this gets unfortunately in many cases..
Same with autonomic symtoms, unless they are very obvious such as severe GI issues, cardiac issues, BP issues, etc...... the more obscure tests such as sweat test are not available at most facialitites... and uesless to most of us.....
As least with the stckies we can help rule out some of the obvious.... I see people often ask what they can expect - I would say - ANYTHING!
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