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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 44 People

    My Cidp Experience

    I have been diagnosed with CIDP it's still hard to admit even though I've been living with it for about 2 years now. Who would have thought at the age of 26 I would be worried about things like falling and not being able to get back up. I am grateful for my neurologist and ivig...
    Ethirtyacre Ethirtyacre 26-30 Jan 12, 2012

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    Cidp Caused By Active Infection

    My son was diagnosed with CIDP over 2 years ago. Until we were able to establish the link between bartonella infection and CIDP we did not see any progress. We are trying to get the word out: get tested for bartonella. We offer information at our website www.beatingbartonella.com...
    MattJ26 MattJ26 41-45 Aug 16, 2012

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    It Changed My Life.

    When I was ten years old, I was an athlete until it happened. I started falling down and losing my balance for no apparent reason. My doctor had no idea what was going on, she even suggested to my parents that I was faking it for attention. It was quite a struggle to get referred...
    JAdam JAdam 18-21, M 8 Responses Dec 10, 2007

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    Chronic Inflammatory Denyelinating Polyneuropathy

    I have had Chronic Inflammatory Demyelinating Polyneuropathy since 1996. I still have some numbness and get very tired at times. In fact sometimes I will sleep for two to three days. I have not had to have any IVIG treatments since last January which is very good since my...
    60CDC 60CDC 56-60, F Dec 31, 2009

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    Patients Survey Into GBS/CIDP

    I have just completed creating a web site based on my web survey run until March 2013. The site is: http://mycidp.weebly.com I am also moving over my experiences into CIDP and what I have foud out from my blog: http://mycidp.blogspot.com Thanks to all those who did fill in...
    Drews Drews 51-55, M Nov 2, 2013

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    Diagnosed With Cidp At Age Four!

    I was diagnosed with CIDP when I was four.  I am 21 now.  I hate this disease.  When I was first dx I was put on oral prednosione and IVIG. At first they did wonders.  I did IVIG's for five years.  I was one of those unlucky ones who had all the...
    Lavender87 Lavender87 18-21 3 Responses Jan 25, 2008

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    What The?

    I had a laminectomy in '93 and conditions decreased from there.  Addictions to pain meds, treatment centers the works.  Finally I was diagnosed with cidp and the neurologist while finding the problem will  not follow the what are the treatment regiments listed on...
    rockingwj rockingwj 51-55, M Sep 14, 2009

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    John

    I m a 45 year old single dad with cidp not feeling good and not having luck with my drs and family looking for some help or advice...................thank u
    johnmoose316 johnmoose316 46-50, M Sep 17, 2013

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    Living With Gbs/cidp

    Hi my name is Mark. Back in 2003 I came down with GBS (Guillain-Barre' Syndrome) due to walking pneumonia. I shut the TV off one night and went to bed and the next morning I woke up paralyzed from the waist down. I was rushed to the hospital where I was put in ICU. They...
    mdolich56 mdolich56 56-60, M 2 Responses May 13, 2012

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    My husband was dxed with CIDP 1 mo ago.

    He was admitted to hospital & given IGIM infusions. Was d/ced, went to rehab to have IV antibiotics for Lyme disease. Last wk sx reoccured & he has now started the infusions again. Could Lyme disease have set this off? We're unsure. He has always been healthy until now. With...
    ALLEGHANY ALLEGHANY 70+, M Jan 4, 2014

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    Cidp What Are the Symptoms

    i have  reasentlly been diagnosed with cidp - my fingers are numb and tingling and my body feels weak and fatigued - i seem to have good days and bad days and wonder if anyone else feels like this as i am not sure if this is normal
    blacker blacker 56-60 1 Response Aug 6, 2009

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    Not a Rosy Story, At Present

    Hi, I'm Eric, 46, Divorced Sigle Dad of 2. Last May, I got a Tetinis Booster. Two weeks later my fingers and toes started going numb. I consulted my Dr who said I was low in Folate? Anyway, things wosrened, September Iwas diagnosed w CIDP.       ...
    Heronemus Heronemus 46-50 2 Responses Nov 2, 2008

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    I was diagnosed with CIDP

    when I was 12 and I sorta laughed when they told me because even though I had no idea what it was and the name was such a mouthful, I was relieved to finally have a diagnosis. And it probably didn't help that my hospital room was rammed full of doctors and about 15 medical...
    AlexPeyton AlexPeyton 18-21, F Nov 2, 2014

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    August 2012: Please Post Dates: I Have Polyneuropathy Due A Neck Injury It’s Been Hell

    I am 49. I was injured due to a whiplash injury, 6 years ago, a truck rear ended my car. My life was gone as I knew it from then on. I had just earned my B.A. and had a good career, and worked FT. I was a power walker, traveled and had great health. The neurologist tell me that...
    activforlife activforlife 46-50, F Aug 9, 2012

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    This Is How It Went With Me...

     Hey. I'm a 21 year old male and I have CIDP. When I first had symptoms (18 years old) there was numbness in hands and feet, muscle twitching, limbs falling asleep VERY easily, severe weakness and fatigue as if i had just done a strenuous work out when, in fact, I hadn't. I...
    qpofthc qpofthc 18-21, M Nov 14, 2009

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    Chronic Inflammatory Denyelinating Polyneuropathy

    I have had Chronic Inflammatory Demyelinating Polyneuropathy since 1996. I still have some numbness and get very tired at times. In fact sometimes I will sleep for two to three days. I have not had to have any IVIG treatments since last January which is very good since my...
    60CDC 60CDC 56-60, F 1 Response Dec 31, 2009

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    Gbs Cidp Survey

    I have just published the fourth part of the results onto my blog: http://mycidp.blogspot.com This is about: recommended treatments and general treatment effectiveness. I hope they are as interesting to others as they are to me. Thanks Drew
    Drews Drews 51-55, M Oct 6, 2012

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    Now That I Have Been Diagnosed...

    I really hope this works...most post I have found for the group is rather old but here goes. I am reaching out and decided to join because I was diagnosed with CIDP in June. My symptoms showed up in the last 2 weeks of May, gait problems and increased to the point where I have...
    lostmemories lostmemories 22-25 4 Responses Jul 29, 2010

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    Drew's Cidp Story

    I have had over 350 completed responses to my survey into GBS & CIDP. I am now publishing my findings via my blog: http://mycidp.blogspot.com As I have gathered a significant amount of data, I will be publishing and commenting on the results over the coming weeks. A big...
    Drews Drews 51-55, M Aug 25, 2012

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    I'm Confused

    Hi I am 29 yrs old and back in Aug 2008 I was diagnosed with guilliane barre syndrom.  My doctor admitted me to the hospital and treated me for this condition.  Fortunately he said I only experienced the sensory symptoms.  For about the last 3 months I have been...
    breaboys breaboys 26-30 Jan 20, 2009

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    Related Experiences

    "Do you have a problem with that?" is one of the contemporary American catchphrases. . Yes, I do. I have many problems with most of what is going on in this society. Very basic...
    ElvisPrickly ElvisPrickly 51-55, M 4 hrs ago

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    It's true that I don't need either to have fun, I've had lots of fun without them, but I also have fun with them. So to me it's fun getting drunk and/or high with friends and...
    udamansteel udamansteel 16-17, F 7 hrs ago

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    I was diagnosed a few months ago and I had a really hard time dealing with it and I still do. I feel like no one cares that I have this disease because it's not cancer, so I won't...
    Haley145 Haley145 13-15, F 3 Responses 8 hrs ago

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    Lately i have been dreaming alot about Stars and planets. I usually meet people that i know in Real life First Dream: Chasing Stars, i was just flying and gathering...
    Selfconsciousness Selfconsciousness 18-21, M 8 hrs ago

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    I was wondering if there was anyone out there that could help me out. I have been going to the doctor for more than a year trying to get a diagnosis. Many doctors, many tests...
    LoveMinPins LoveMinPins 51-55, F 1 Response 9 hrs ago

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    When I was 7 I had imaginary friends, but they never left as I got older. They just became more real. I understood no one could see them, no one could hear them. It was only me...
    Schizotistic Schizotistic 22-25, M 2 Responses 9 hrs ago

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    and it's quite logical phobia if you take notice of my life. At my 25 I have achieved NOTHING or almost nothing.. I am currently unemployed, live in a god-forsaken third world...
    sweetsnake sweetsnake 22-25, F 9 hrs ago

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    Long story short. I have had LS for 2 years. I have tried Clob, Protopic, low oxalate diet, honey, Crisco, with no success. What IS working for me is a low sugar, low wheat, low...
    Ann2711 Ann2711 56-60 10 hrs ago

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    I don't think they are thinking as profoundly about things as I am. Each to their own, I don't want to tell them to do otherwise or to claim that what I am doing is right. But...
    FittingUsername FittingUsername 22-25, M 12 hrs ago

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    I have never really ever thought of my self, as beautiful, hell I have never even thought of my self, as even average. I just always feel like, I am the ugliest person in the world...
    BroknGirl89 BroknGirl89 26-30, F 21 hrs ago

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    I only have one Ep account. Yes I have deleted my account several times, and have always came back, and yes I have changed my name, more times than this site has made improvements...
    BroknGirl89 BroknGirl89 26-30, F 1 Response 21 hrs ago

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    Hi my name is Destiny, i just recently got diagnosed with chronic pancreatitis. ive been suffering with pain since feb. and im recently getting out of one of the worst attacks ive...
    dest2 dest2 26-30, F 1 Response 1 day ago

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    I was in foster care until I was fifteen, then moved in with a boyfriend of mine in a studio apartment with ten other people, three of which never paid rent, they were homeless...
    JuniperGin JuniperGin 18-21, F 2 days ago

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    I have chronic insomnia I haven't slept in 16 days now
    photographyismylife photographyismylife 13-15, F 1 Response 3 days ago

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    I have all 3 pleasurable diseases of OCD, Chronic Depression, and Anxiety. All eating away at my soul. I am in therapy..and it does work. However no one really understands the way...
    EleanorSmithson EleanorSmithson 18-21, F 4 days ago

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    I have a chronic illness and feel very lonely. I want to be a wife and share my life but how???
    loveroflife44 loveroflife44 46-50, F 5 days ago

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    10 Tips to Quickly End Your Partner's Chronic Pain Here (http://luv2sex.theblogpress.com/?p=4342) The only thing worse than struggling with chronic pain is watching your partner...
    how2stayyoung how2stayyoung 51-55, M 5 days ago

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    One sunny November morning I awoke to a strange pain in 3 far spaced teeth in my lower left jaw, it was a nagging pain that almost felt more like a pressure so deep it bored...
    itwouldntbemakebelieve itwouldntbemakebelieve 22-25 Jun 26

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    I was diagnosed with Hashimoto's March 2015. My identical twin was diagnosed 20 years ago. She can’t remember her exact symptoms that led to her diagnosis after two years and...
    MinnieT MinnieT 36-40, F 2 Responses Jun 24

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    I think a lot about plastic surgery..or "cosmetic surgery". Maybe it's my age, maybe it's the fact that it's everywhere. I can't turn on the TV these days without having "augmented...
    GalateaSpheres GalateaSpheres 36-40, F 12 Responses Jun 24

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    Hello everyone, it brings me great pleasure to tell you that I have made a Facebook page specially for plexus slim so that you can all follow me if you wish to see updates...
    PlexusSlimChick PlexusSlimChick 22-25, F Jun 23

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    Hello everyone, it brings me great pleasure to tell you that I have made a Facebook page specially for plexus slim so that you can all follow me if you wish to see updates...
    PlexusSlimChick PlexusSlimChick 22-25, F Jun 23

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    Hello everyone, it brings me great pleasure to tell you that I have made a Facebook page specially for plexus slim so that you can all follow me if you wish to see updates...
    PlexusSlimChick PlexusSlimChick 22-25, F Jun 23

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