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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 45 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    I missed the important deadline and now I am stressed like I haven't been in a really long time. I couldn't sleep last night. As soon as I lied down I started to feel very sick. My...
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    I love body mods I especially have a thing for stretched piercings. I have a 0g septum and my left nipple is pierced vertically and stretched to a 00 gauge. I have tunnels in both...
    Septumgauger Septumgauger 36-40, M 13 hrs ago

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    I am the youngest in our small family of 4. The oldest memory that I have is my mom and my drunk dad fighting. My dad has been a drunkard all through his life. He never really...
    caughtinthemiddle1 caughtinthemiddle1 22-25, F 15 hrs ago

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    One of many greatest possible home companies for you to startwith is really a " Plugin Profit Site ." This short article will take a short look at these on the web buiness...
    angoracheck53 angoracheck53 41-45, F 16 hrs ago

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    I'm wondering if anyone has had the same weird experience as me. Recently when i leave the house, I have these brief moments like blackouts for a few seconds (at least thats what...
    auroraskyy auroraskyy 18-21, F 2 Responses 16 hrs ago

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    I think the only reason I'm on here right now is because I've never talked about this out loud to anyone, and being in this type of family dynamic is isolating. I only have to...
    Summer26061997 Summer26061997 18-21, F 16 hrs ago

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    I came to depend on a sporadic PM with an EP member who was seriously listening and helping me with my issues as an OW. Very sweet and kind person. I'm hoping I haven't offended...
    LotusLIL LotusLIL 46-50, F 16 hrs ago

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    I think one of the more depressing things I put up with at this point in my life would have to be listening to all these other people around my age - and even years younger - who...
    Jugemu Jugemu 31-35, M 1 Response 16 hrs ago

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    Last week when returning home from the pub I was groped in the bus. I felt terrified, insecure and good, all at the same time. I was not too drunk but I was tired as I had been...
    coldboy coldboy 26-30 1 Response 16 hrs ago

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    i have killed 2 peepsi cleared a room and have seen brains and the open body of a subject lol but i liked it
    cpltew cpltew 31-35 17 hrs ago

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    Soon I will be starting my last year in highschool and even after these years I am still getting those bad feelings about it.. I had this dream last night that everybody was making...
    TrueRedRose96 TrueRedRose96 18-21 2 Responses 18 hrs ago

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    I never knew what it felt like til I lost my precious baby almost a year ago. It still hurts me today. Time doesn't heal all. A parent should NEVER have to bury a child. I find...
    Photogirl685 Photogirl685 26-30, F 18 hrs ago

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    I'm starting to come around to the thought that everything in dreams can and does have a speculative 'meaning' not always a truth but in the sense of we dream what we know - I...
    SoberingBabySteps SoberingBabySteps 31-35, M 1 Response 18 hrs ago

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    I doubt I have Fibromyalgia, I have been suffering from migraine since childhood.. I always feel tired, fatigue and dizzy. The tiring feeling is always with me and it increased...
    dare86 dare86 26-30, M 18 hrs ago

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    It's a curse!!!! I've always been the hornier one in all my relationships and it's always sucked. The man I'm dating now has the closest sex drive to me that I've dated but there...
    EQueen420 EQueen420 26-30, F 7 Responses 18 hrs ago

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    I had the same recurring dream for many years as a child. I haven't had it now for quite a while but I have been thinking about it a lot. In my dream, I am in my mom's car in a...
    audhumla audhumla 22-25, F 19 hrs ago

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    I think. Thirty years I have been living my life believing I have an autoimmune disease called scleroderma. Along with hypothyroidism, which also has been with me for 30 years...
    lethalea lethalea 46-50, F 19 hrs ago

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    I'm waiting on more tests to rule out some other things but I think I have endometriosis based off my symptoms. I get bad stomach pain normally all day. It's made worse by eating...
    fallenstar23 fallenstar23 22-25, F 1 day ago

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    Hey lovely ladies, I was wondering if anyone out there has any success on managing your pain through herbal remedies, therapies, foods to avoid etc... I have endometriosis and...
    Daniellasw Daniellasw 26-30, F 2 Responses 1 day ago

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    I'm currently 28 healthy-ish ( just had a physical and all was well :) ) and was diagnosed at age 10. Every night I would go to sleep I would wake up vomiting I would aspirate my...
    nighthawkra nighthawkra 26-30, M 2 days ago

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    The invisible pain. No one believes the level of pain this chronic disease causes.. I hate it so much.. being in pain on and off since 20 after acute pancreatitis I spent 7months...
    stefx85 stefx85 26-30, M 2 days ago

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    The worst thing is when pain isn't being taken seriously. I have chronic pancreatitis and it was on and off for 9y that I I had a c.t scan and discovered that I had calcifications...
    stefx85 stefx85 26-30, M 2 days ago