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Old 01-13-2008, 08:18 PM #14
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
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15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default I do think we are getting off the point of THIS

thread a bit...but in relation to Skin or Seural biopsies, there are a lot, repeat LOT of factors to consider, reconsider and then seriously consider before having one. The key aspects that made me balk at a seural biopsy were 1-it IS invasive surgery, resulting in permanent loss of any sensory feeling at the biopsy site [Me? I 'declined' the option as, I wanted some HOPE for restoration of any functions..not loss anywhere!] 2- any biopsy to assess nerve damages is only as good as the laboratory doing the examinations..plus the quality of the transport of that precious tissue to be examined 3-insurance company reluctance to adopt the punch biopsy as acceptable for any standards while at the same time declaring the seural biopsy obsolete and 'invasive'. Therefore one has to 'assume' that at this point, biopsies can only CONFIRM that and what nerve tissues and fibers have died....Thus only of value in conjunction with all other test results. The following site..if you go to it in depth...and it IS in GREAT depth will tell you that there are a variety of ways to diagnose CIDP and variants. http://www.cidpinfo.com/
I have mentioned this site before, but has anyone read it? It has been in the 'stickies' for a bit. This might be a shorter and easier 'version' to grasp:
http://www.guideline.gov/summary/sum...10457&nbr=5480

Glenn? As for 'classic CIDP presentations'? I know of very very few who meet 'classic' in any shape or form...Those most meeting classic criteria are those initially diagnosed with GBS, and changed to CIDP diag. when it doesn't 'abate'...In my own case initially issues were wholly and totally sensory...uncommon. Testing for spinal and brain deterioration or damages were 'nil', The only clear criteria I met were the deteriorating nerve conduction studies, reflex and strong immune indications in the spinal tap studies. Once the whole 'complement' of testing was one, I found I'd 'achieved' 8 out of the 14 criteria [ten were key ones, I'd met 8 of 10 key] required for diagnosis by my insurance company. [Also mostly in the wustl..criteria as well] Note that the recommendation for biopsy is NOT a priority these days.
With any neuropathy, be it autoimmune or not, the field of conditions to choose from is not just vast- it is HUGE. Key to it all is IF the physicians are really doing the appropriate key diagnostics to EXCLUDE all else. Yet, a majority do not even try, nor seem to care...I have to ask of us who have been thru the diagnostic food processor tho is...IS it up to US to voice concerns about doctors and attitudes? If so where can we constructively voice our concerns? It is apparent that the medical community is. for the most part, indifferent right now.
Be it hereditary, immune, toxic, trauma, diabetic or the good old standby 'idiopathic', doctors are for the most part, 'in the dark' about the majority of PN issues. I guess I am just venting some of my own frustrations here, not only because of my PN issues, but for every single soul who has ever posted here. It's scary enuf stuff to deal with on your own...That so many docs are either indifferent or incapable of caring is truly beyond me-thus angers me, as it should others. Enough! - j
's truly to all in pain.
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