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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 46 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I am not so sure to tell my parents that I am going out late at night with my friends and that I have been in other places they would surely not permit me to go. I just lied...
    Jubbydith Jubbydith 18-21, F 1 Response 47 mins ago

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    Yes, I like tattoos but don't have any yet. I might get one someday but it would have to have some meaning behind it.
    PanHead1989 PanHead1989 26-30, M 1 hr ago

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    It was a Saturday, around nine o'clock. I remember I had been feeling particularly apathetic that day, since a second, strong bout of depression had hit me the beginning of that...
    Kaoruk100 Kaoruk100 18-21, F 1 hr ago

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    Its scarring me more and more ..i am scared how my life would be .. i am unable to stand for myself .. when someone is being aggressive to me i cant say a word .. sometimes i even...
    newsun newsun 18-21, M 1 hr ago

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    I never thought that it would happen. Especially not like this. I never thought of my family to become a divorced family. It was during my senior year of high school. Just last...
    YoSavvyGirl YoSavvyGirl 18-21, F 2 hrs ago

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    Hi, I have had this condition for 13 yrs now.Mine was caused from injuries at 6 wks old. Ive been told it isnt "big" enough to do surgery and they wont even put a shunt in, cos of...
    S0ul3zz S0ul3zz 36-40, F 5 hrs ago

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    my husband tells me that I don't understand it, I "don't get it"...everything he has to go through....but I do. I do get it, because although I don't endure physical pain I endure...
    jennymmay jennymmay 31-35, F 4 Responses 13 hrs ago

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    A few days ago, I felt some twitching in my face. I've dealt with twitching for a while now, so I wasn't too surprised by it. But this time it lasted for about an hour. My twitches...
    hiddenkitty hiddenkitty 18-21, F 14 hrs ago

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    Thick blood (also known as hypercoagulability, Antiphospholipids, and Hughes Syndrome) is a condition where the blood is more viscous (thicker and stickier) than normal. The...
    topcap2017 topcap2017 41-45, M 1 Response 19 hrs ago

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    Another bout has struck me down, looks like another few days of severe rest. Lucky me(!)
    ProjectExperienceNameUser ProjectExperienceNameUser 26-30, M 1 day ago

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    When i was 16 i had Glandular fever and was off school for about 2 weeks with chronic fever and swollen glands and server fatigue. I am now 23 years old and still struggeling with...
    kathrynvanstaden kathrynvanstaden 22-25, F 1 day ago

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    i have several mental illnesses. i have been hospitalized many times and in rehabs. i take medication every day. i do not wish to talk about it with anyone but girls though...
    cosmosdrift cosmosdrift 31-35, F 1 Response 2 days ago

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    Chronically. I feel like it's been a drug that I can't get off of. I am always crushing on someone. Celebrities, unavailable people (men and women), people who are not my type...
    CDeFer CDeFer 46-50, F 3 days ago

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    Any way to stop feeling fatigued? Anyone had any luck gaining energy back?
    WhiskeyT WhiskeyT 22-25, F 1 Response 4 days ago

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    My family get on my nerves because I'm the only child my parent's don't care about. I'm the youngest and people usually say that makes you the "baby" and the "precious one". What...
    Freedgorgan Freedgorgan 16-17, M 1 Response 4 days ago

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    I never want to have children. For some people it seems like an impossible concept that a female does not to mother children. It is an individual choice, some women want to have...
    moonlightflower moonlightflower 22-25, F 4 days ago

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    Hi, I stumbled upon this site while searching ( as iv done thousands of times, for yeeears now) in hopes that I can find some magical supplement to cure the living hell that my...
    Hopelesslyfallen Hopelesslyfallen 31-35, F 4 days ago

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    Search for SENNA LEAF (I use Swanson Health Products, 500mg). Take 3 capsules daily, one in morning, one midafternoon, one at bedtime. Follow the same schedule with COLACE (OTC...
    rackert rackert 66-70, M 4 days ago

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    I am 22 and have a chronic illness that's impacting my quality of life in ways I never imagined.
    MandyR34 MandyR34 22-25, F 6 days ago

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    I was diagnosed 3yr3yr. The pain is nonstop now.i can no longer work as well as i used to.and i doubt social security will approve me on first try.are there any financial resources...
    kittycow9 kittycow9 51-55, F 6 days ago

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    Does anyone else experience a great feeling of anxiety and impending constant doom from this? Like something is terribly wrong...does anyone else feel this horrific panic deep in...
    myreality1 myreality1 36-40, M 6 days ago

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    Went to podiatrist friend today after having heel pain I suspected was PF. Diagnosis confirmed, anti inflammatory prescribed and foot taped to stabilize the tendon. Hopefully this...
    forbidden67 forbidden67 46-50, F 2 Responses Jan 28

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