Home Menu

Site Navigation



NeuroTalk Support Groups > > >

CIPD is the diagnosis

Reply
 
Thread Tools Display Modes
Old 09-20-2011, 12:06 AM #1
Liftyourhands7 Liftyourhands7 is offline
Member
  
Join Date: Sep 2011
Posts: 180
10 yr Member
Liftyourhands7 Liftyourhands7 is offline
Member
 
Join Date: Sep 2011
Posts: 180
10 yr Member
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
Liftyourhands7 is offline   Reply With QuoteReply With Quote
Old 09-20-2011, 06:57 AM #2
JB63 JB63 is offline
Member
  
Join Date: Jun 2011
Location: NY
Posts: 141
10 yr Member
JB63 JB63 is offline
Member
 
Join Date: Jun 2011
Location: NY
Posts: 141
10 yr Member
Default
I posted this in another thread....





***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
JB63 is offline   Reply With QuoteReply With Quote
Old 09-20-2011, 07:27 AM #3
glenntaj glenntaj is offline
Magnate
  
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
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).
glenntaj is offline   Reply With QuoteReply With Quote
Old 09-20-2011, 08:35 AM #4
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
  
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb
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
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 09-20-2011, 04:11 PM #5
Liftyourhands7 Liftyourhands7 is offline
Member
  
Join Date: Sep 2011
Posts: 180
10 yr Member
Liftyourhands7 Liftyourhands7 is offline
Member
 
Join Date: Sep 2011
Posts: 180
10 yr Member
Default
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
Liftyourhands7 is offline   Reply With QuoteReply With Quote
Old 09-20-2011, 04:16 PM #6
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
  
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb
You are welcome... Good luck to you. It might work for you.

Read up on it because there can be side effects, etc.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 09-21-2011, 01:20 AM #7
Liftyourhands7 Liftyourhands7 is offline
Member
  
Join Date: Sep 2011
Posts: 180
10 yr Member
Liftyourhands7 Liftyourhands7 is offline
Member
 
Join Date: Sep 2011
Posts: 180
10 yr Member
Default
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
Liftyourhands7 is offline   Reply With QuoteReply With Quote
Old 09-21-2011, 05:23 AM #8
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
  
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb
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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 09-24-2011, 10:34 PM #9
Liftyourhands7 Liftyourhands7 is offline
Member
  
Join Date: Sep 2011
Posts: 180
10 yr Member
Liftyourhands7 Liftyourhands7 is offline
Member
 
Join Date: Sep 2011
Posts: 180
10 yr Member
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
Liftyourhands7 is offline   Reply With QuoteReply With Quote
Reply

« Previous Thread | Next Thread »
Thread Tools
Display Modes
Linear Mode Linear Mode

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
just got my diagnosis poetic license Multiple Sclerosis 17 06-28-2009 08:37 PM
New-Frantic-CIPD? Need Input! ras1256 Peripheral Neuropathy 14 03-25-2009 01:39 AM
Diagnosis Parkinson's Disease: You Are Not Alone Video Diagnosis Parkinson's Diseas Stitcher Parkinson's Disease 0 02-02-2009 12:56 AM
New Diagnosis mrslee337 New Member Introductions 7 07-01-2007 05:08 PM
Fibromyalgia Syndrome: Presentation, Diagnosis, and Differential Diagnosis firemonkey Fibromyalgia and Chronic Fatigue 0 11-19-2006 09:51 PM


All times are GMT -5. The time now is 12:56 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home