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CIPD is the diagnosis

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Unread 09-20-2011, 12:06 AM   #1
Liftyourhands7
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Default CIPD is the diagnosis

Hi everyone,

I finally after many months got dx' Neuro Doc did a spinal tap last week, with my symptoms and slightly elevated protein in my spinal fluid Doctor says I have CIPD. He wants to treat me with Ivig (I think that's what he said) This is all so new to me. What questions should I be asking before I start treatment. Thanks for any help. Jan
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Unread 09-20-2011, 06:57 AM   #2
JB63
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I posted this in another thread....



http://vimeo.com/11674104

***Excellent*** video explaining the disease and treatment it a way that is easy to understand, but not to simplistic. It was initially thought that I had CIDP, but spinal tap and the blood work basicall ruled it out.

This is the parent site to the video.

http://www.gbs-cidp.org/index.html
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Unread 09-20-2011, 07:27 AM   #3
glenntaj
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Default I also recommend--

--the site JB63 suggests at the bottom of the post; the Guillain-Barre/Chronic Immune Demyelinating Polyneuropathy Foundation is an excellent resource for those with those conditions (the people there know what they're talking about).
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Unread 09-20-2011, 08:35 AM   #4
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We have an IVIG post here:

http://neurotalk.psychcentral.com/fo...f=20&styleid=9

Also several of our posters on Myasthenia Gravis forum use IVIG or have in the past. If you search "IVIG" using the search function at the top of the page, you will find posts there too.
Here is a link to there:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=77
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Unread 09-20-2011, 04:11 PM   #5
Liftyourhands7
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Thank you so much for all the info, I am a little overwhelmed on where to start, I believe the Doc is wanting me to do the IVIG treatment.Please pray this treatment will work for me. God is good all of the time. Thanks, Jan
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Unread 09-20-2011, 04:16 PM   #6
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You are welcome... Good luck to you. It might work for you.

Read up on it because there can be side effects, etc.
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Unread 09-21-2011, 01:20 AM   #7
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MrsD,

Another question if I might, my symptoms started out 8 months ago with numbness in toes left foot progressing up my left leg with numbness and burning, then right toes, right leg and then both arms now I have twitching all over, I was given a EMG normal results many blood tests a spinal tap which came back slightly elevated for protein 50 mg normal for my lab 15-45, based on my symptoms which now include pain in muscles CIPD was Neuro's Dx, wants to start me on IVIG right away. Thanks for any comments. Jan
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Unread 09-21-2011, 05:23 AM   #8
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IVIG is one of the few things that actually help certain types of PN.

PNs that are autoimmune and progressing, may respond well to IVIG.

A quick diagnosis before much damage is done, and IVIG trial may prove to be a good treatment for you.
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Unread 09-24-2011, 10:34 PM   #9
Liftyourhands7
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Default I was in the hospital

MrsD,

After a 4 day stay at the hospital now the Doc says I have idiopathic Neuropathy and that IVIg would not help this condition, can you please give me your thoughts on this I am numb in so many places now my forehead is getting numb, I'm so desperate, thanks for any help. Jan
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