Jody — Fibro is a diagnosis of exclusion. It is only diagnosed when everything else is ruled out.

CIDP/GBS are [B]not [/B]the same and I’m flummoxed as to why people would think they are. There are several tests — NCV study, nerve biopsy, reflex response tests, elevated proteins in cerebral spinal fluid. Demylenation is a hallmark of CIDP/GBS. Of course not every person has the same results on every tests (I myself did not have elevated proteins in spinal fluid but my NCV results left no doubt). But there is a clear, defined diagnostic protocol and these are not diseases that are disagnosed because everything else has been ruled out.

I think it’s detrimental and dangerous misinformation to put CIDP/GBS in the same category as a syndrome with no proven treatment protocols.

The recent case of the Minnesota pork plant workers illustrates this perfectly. They were initially diagnosed with CIDP, but that diagnosis was changed when none of them showed slowed nerve conduction on the NCV studies. Fibro is only diagnosed when all other potential causes have been ruled out.

kat

Jody so sorry to hear about all of the trouble and wrong info. I don’t blame you for being mad.
CIDP is doing a job on me mentally and emotionaly. I was dx Nov 2007. A few months after you.
I have started a medical journal which i will take into md next Wed the 30th.
I’ve had 13 IVIG infusions, which have not helped, on a high dose of Prednisone, and CellCept. So far, no results.
I have zings, zangs, pain, numbness, and electric shocks all over body.
I’m can not stand for over 30 seconds without the aid of a walker and occas use a w/c.
Trying to do anything around the house is extremely difficult.
One thought, they tried me on Cymbalta and the drug made me aggressive, angry, and wanting to hit something. They had to take me off of the Cymbalta.
I sure hope the lawyer has good news for you and a direction to head. That Neuro MD should not be allowed to practice.
Don’t give up. I know how easy to say I give up, but neither of us can do that. We still have a life to live.
God will give you the strenght to get through this and you will be in my prayers.
Beth

Jody so sorry to hear about all of the trouble and wrong info. I don’t blame you for being mad.
CIDP is doing a job on me mentally and emotionaly. I was dx Nov 2007. A few months after you.
I have started a medical journal which i will take into md next Wed the 30th.
I’ve had 13 IVIG infusions, which have not helped, on a high dose of Prednisone, and CellCept. So far, no results.
I have zings, zangs, pain, numbness, and electric shocks all over body.
I’m can not stand for over 30 seconds without the aid of a walker and occas use a w/c.
Trying to do anything around the house is extremely difficult.
One thought, they tried me on Cymbalta and the drug made me aggressive, angry, and wanting to hit something. They had to take me off of the Cymbalta.
I sure hope the lawyer has good news for you and a direction to head. That Neuro MD should not be allowed to practice.
Don’t give up. I know how easy to say I give up, but neither of us can do that. We still have a life to live.
God will give you the strenght to get through this and you will be in my prayers.
Beth

Make a list and take it with you. Ask about each med and what determines when it is prescribed.
What about PT at home? And OT for arm?
How are you managing housework, etc?
Thoughts and prayers are with you.

How are you this day and did you find any MD that will take over?:)

I can so relate to your frustration at this point. I spent 3 months as a patient at St Marys (Mayo) in Rochester, only to be told that there was nothing else they could do for me, as I had the progressive form of CIDP. They had run up my bill to $200,000 in that time period with numerous tests that I now feel I did not need (4 MRIs, 2 spinal taps, CT-Scans, a bone marrow biospy, a sural nerve root biopsy, a lip biopsy, a spinal nerve root biopsy, X-rays, 2 EMGs, etc.) You get the picture…

The Unniversity of Minnesota is where I went after Mayo gave me such a poor prognosis. There I was able to get in to see Dr. Gareth Parry who did not write me off. He was able to stop the progression of my CIDP using chemo & 4 years later I am still stable. I still need AFOs to walk (severe foot drop), & take a cane when I leave the house. But my walking is actually pretty good now, after spending 2 1/2 years strictly in a power chair. I just help you get the help you need before there is too much destruction to your nerves, or that it becomes permanent.
Pam from MN