# Cidp



## JadedCalalily (Feb 24, 2011)

*This is one thing that has always been a touchy subject for me. I have had CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) for approximently 14 years. I has had a huge impact on my life and how I see myself.

It all started when I was 11.. I was walking to the bus stop and my legs gave out from underneath me.. my father.. knowing I was the kind to do anything to get out of going to school, put me on the bus where I later collapsed at school. 
I was then taken to the closest hospital who then transferred me to a larger hospital where I had to under-go a series of tests.. Including: Spinal tap, EMG (Elecromyography), NCS (Nerve Conduction Study), Along with a lot of blood work.
I ended up in the hospital for nearly a month and a half, pretty much paralyzed. Couldn't walk, get up, write... I had no strength what so ever. Eventually they started me on an IV treatment called IVIg (Intravenous Immunoglobulin) and it started giving me some strength back. From there I basically had to re learn to walk. 
I got to go home, but could not return to school as there were severe risks of relapsing.. so I was home-schooled. 
I started back to regular school in grade 8... just in time for graduation. I was talked about a lot. GO figure.. grade 8 graduation night.. I go to get my award and collapse in front of the whole school, I was horrified. I broke down into tears as some of the fellow students laughed at me. There was 2 that actually helped me which made things a little easier. So back to the hospital I went. 
When I turned 16 I decided seeing how I got so many IV's that I would get a portacath put in.. it is a small shunt under my left collar bone that is used as an IV access point. So now I have a random bump there but it was so much easier then getting poked at 7 times trying to access a vein (they had been used so much in the past from the IV that my veins just collapsed when poked).

To this day I still go in to get monthly treatments but can say I am happy I am in better shape then I was in the beginning. I live a fairly normal life now.

For those who have never heard of this condition (which I have found is most people), here is a link with a lot of info on it. Sorry this post is so long just had to get it out there. As hard as it was sharing all of that.

http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy

I am really hoping to eventually writing about my experience living with this condition to raise awareness and make it known that this disorder is out there. 
*


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## JamieHasAnxiety (Feb 15, 2011)

Wow thats intense. Im glad your on the road to recovery, and you seem pretty bright about this.
I have a little brother who is paralyzed and I've had to make sure hes okay my entire life.
I'm so familiar with hospitals its actually soothing to be at one for me.

Keep your head up, I wish the best for you.


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## FairleighCalm (May 20, 2007)

Writing a book would help so many others. I'd like to write a book about anxiety. Glad to hear you're in a better place.


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## JadedCalalily (Feb 24, 2011)

FairleighCalm said:


> Writing a book would help so many others. I'd like to write a book about anxiety. Glad to hear you're in a better place.


Well from what I remember when I was younger a neurologist that I saw said that only 1 in 100,000 people develop this condition. I got lucky and have been in a controlled remission.


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## Brightpaperwarewolf (Oct 16, 2008)

I remember getting needled so much they offered to port me, which I declined. You can only be poked so many times your forearms become incredibly hardened and hard to draw blood from. If I did over again, I would've taken the port. I'm a cancer survivor so I can relate to the treatments to a degree. I had my share of spinal taps, tons of blood work. 

So what is the treatment plan consist of? 

It takes a lot of courage to discuss what ails you.


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## JadedCalalily (Feb 24, 2011)

Right now all my treatment consists of is IVIg once monthly (plus heparin to flush the port) to keep me in a some what controlled remission. 
Personally I think getting my port was one of the best decisions I have ever made, regardless if it looks funny it keeps me healthy and going.
In the beginning the beginning they had me on IVIg, Solimedral (sp?) and Prednisone... You probably know about prednisone.


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## Brightpaperwarewolf (Oct 16, 2008)

Did they make ya sit there for a few hours to do so? Not sure about prednisone, I took so many things I don't even remember. 

So is it pretty much under control as long as you keep up with your treatments?


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## JadedCalalily (Feb 24, 2011)

In the beginning they ran my treatment over 8 hours, so I would go in and spend the night. Now it takes a matter of an hour and a half.. that includes both saline flushes in the beginning and end of the treatment along with the heparin flush on my port. 

Prednisone is an immunosuppressant but doctors seem to use it for EVERYTHING! I personally didn't like it and after a while my body became immune to it because I was on it for so long.

Yes, as long as I keep up with my treatments I am usually fine. But once I begin to have a relapse I know ... my fingers go crooked and wont straighten properly... it's such a pain sometimes. As I said in a previous post ... I would much rather a bit of numbness and crooked fingers to not being able to walk or do anything for myself.


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## Drews (Mar 17, 2012)

*GBS/CIDP Survey Information*

Hi, I have created a survey to learn more information about these illnesses @ http://gbs-cidp.questionpro.com

As I have already had over 100 completed in 4 days I have published some intital results @ http://gbs-cidpsurvey.blogspot.com

If you haven't filled it in please do, it will run until March 2013.

Thanks Drew


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## mattBB (Feb 17, 2013)

I am not here to lead anyone down a path they do not wish to consider, but you do so at your own folly. I have posted here before and this will be my last. My son was diagnosed with CIDP, we went to numerous doctors who wanted him to be treated with IVIG, steroids, and other nasty drugs. We did not start to see healing until he was diagnosed with bartonella. Vector borne bacteria wreak havoc in the body and they are OFTEN misdiagnosed as "immune system diseases". Our son is now off the IVIG and battling the remainder of the bartonella.

Your doctors will dismiss this. Yet the research exists and my son is living proof. We document our story at www.beatingbartonella.com and I will be happy to hear from anyone who wants/needs more information at [email protected]. I will not be checking in to see if there are questions/responses. To all the naysayers all I can say is we are doing everything we can to spread the word: if you do not get tested you will never know the truth. If you close your minds, then no one can help you. We wish you all the best of luck. We do not promise this will cover everyone, but we would be remiss if we did not do all we could to let you know.

CIDP is not an illness, don't believe me, then ask your doctor what causes it. The fact is they don't know and cannot give you a definitive answer (oh yes, the "your immune system is attacking your nervous system but we don't know why" answer is out there). Without treating the bartonella than CIDP will not go into remission. Steroids will lower your immune system and only make it worse. I could sit here and debate with you the point, the simple fact is, if you are comfortable with your treatment and the progression of your disease than stick with your plan. However if you are frustrated with a lack of progress within your body and lack of answers from the doctors who treat you, then you owe it to yourself to rule it out. BTW I should have mentioned, the ONLY lab that can effectively test for bartonella is Galaxy labs: http://beatingbartonella.com/wp/?page_id=39. Any other lab is a waste of your time and money. (I do not work for any lab or medical office, I am merely a parent trying to spread the word).
Matt


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