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Old 04-01-2013, 10:31   #1
JJ_BPK
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Join Date: Apr 2008
Location: 18 yrs upstate NY, 30 yrs South Florida, 20 yrs Conch Republic, now chasing G-Kids in NOVA & UK
Posts: 11,901
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

I have held off posting this as I didn't have much in the way of real data to ask any questions.

Background: My wife started falling in early December, By January she was using a walker, By February she could not walk.

She has not been sick nor suffered any accident that could have injured her spine. She is not over weight, no heart, cholesterol, or sugar problems.

We have been to several doctors, many test, and still no idea what is causing the problem.

At one point the theory was West Nile Disease, but that proved false. The local health department test her blood and think she may have had some sort of low level WND at some time in the past, but no active pathogen were found.

We do know it's NOT ALS, MS, NPH, and not blood borne. She had breast cancer 8 yrs ago and all the tags show negative relapse or recurrence.

In early March they did a lumbar puncture and noted the protein level above 800 and red blood cell count above 30. She received a series of drip infusions for 5 days, not unlike chemo, based on the early readings of the lumbar puncture.

Today they THINK the cause is CIDP.

After reading the web, it seams CIDP is rare and not a lot of good prognosis.

Does anyone have any insights, pointers, or experience??

Thanks in advance..
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