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Old 01-20-2011, 06:32 PM #7
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default OK, so is it back to square one?

Ideopathic to me simply seems that it's too much bother to LOOK for the real problem or problems. Basic causes are inherited, toxic, structural and auto-immune triggered. Thing is? Most docs do NOT want to go into the expensive venues of inherited and auto-immune.
The latter was my cause in my case...A very loong bout of pneumonia a few months before, caught up with me, and set my whole body into a downwards tailspin!
As long as you can move, breathe and have insurance? Get copies of all your prior records [for your files of course-no other doc needs to know who you are going to see!] and use them along with Liza-Jane's worksheets [ http://www.lizajane.org/] regarding tests done or not in relation to your sensibilities. Just bring test results, not any commentary to a new doc for a second opinion and the statement that 'we didn't communicate well'. Leave it at that! The new doc can tell from test results what menu of other tests they'd prefer to do? And they will do them!
This part of the St Louis Univ. testing protocols can also help you decide:
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab
For me, by the time I was diagnosed, much damage was done..some of it permanent. But, IF I'd not gotten my diagnosis? Likely, I'd be a goner by now.
I agree that some meds can and do help? But, some never eliminate that overall buzz [of pain]... unless they dull the brain as well. With many neuropathies? Straight super class pain killers don't do a THING other than muzzie up that brain so you simply don't care! About anything.
Soo, try and get as much testing and ideally treatments done before we get to the point insurance-wise where we won't be able to get tested or treated! More importantly? DO IT WHILE YOU CAN DO IT!
's!!!!!!! - j
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