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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 44 People

    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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    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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    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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    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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    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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    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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    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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    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 Dec 31, 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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I'm only 21 and I've been suffering from back and neck pain for nearly 2 years now. i was in a bad car accident last june that had made my back pain even worse ( i had already...
    darnswell13 darnswell13 18-21, F 2 Responses 6 days ago

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    Hi I wanted to post that I am with a company in the US for all natural products for various medical conditions, one product that helps inflammatory issues, another product that...
    carolgem carolgem 46-50, F 2 days ago

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    I'm 21, it's been just over a year now that I've had chronic back pain. It's stopped me from developing a promising basketball career. But today I've been allowed by my physios to...
    TallThing TallThing 18-21, F 7 Responses 5 days ago

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    I haven't been diagnosed yet. my Dr is trying to eliminate anything else it could be, but I am suffering. I'm having a hard time going to work everyday cuz i can't get out of...
    kareenmarie kareenmarie 36-40, F Apr 30

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    I am 17 years old. I have danced (ballet, tap & freestyle) since I was 3, I also do other sports activities. I work in an office so am sat down a lot of the time. I will admit I am...
    AHelpfulLover AHelpfulLover 16-17, F May 12

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    Hiya. Ive just found out I have hepatitis c, and as well as feeling quite unwell, im really scared, because my son has had a liver transplant for a different liver disease, and I...
    Propsta84 Propsta84 26-30, M 2 Responses May 18

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    Hi wanted to share my facebook page www.facebook.com/healthyproductswithcarol where I try to keep up often with testimonials from past users to show how our products have helped...
    carolgem carolgem 46-50, F 1 day ago

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    my Dr is trying to eliminate stuff before he diagnosis me with cfs. he recently did a mono test and drug test (which was my psychiatrist idea). I wonder what he'll try next...
    kareenmarie kareenmarie 36-40, F 1 Response May 4

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    I'm a bit hesitant to add this to my experiences as I don't know for sure if I suffer from it, but due to my habit of checking the internet whenever something is not right...
    RealLifePerson RealLifePerson 26-30, M 1 Response a week ago

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    I was diagnosed in 2011 in my late 40's. When I researched this I found: - they don't know what causes it - there is no cure - they don't bother treating it until you are in bad...
    MarriedGuy244 MarriedGuy244 51-55, M 6 days ago

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    Hi, I've had CFS for many years. I go out when I'm feeling ok but on the whole I'd prefer to be able to speak to people online. I'm happy and upbeat. CFS doesn't mean all we...
    LizardW13 LizardW13 46-50, F 2 days ago

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    I am really struggling with the chronic affect of Sepsis. My doctor gave me a 10% of survival and I have chronic issues. Has anyone applied for disability?
    shutche905 shutche905 56-60, F 3 days ago

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    I have not posted since 2013... This post is kind of an update and also a weight question for fellow Achalasia/Gastroparesis/GI Dysmotility sufferers. It is a bit of a long read so...
    AlxandriaNicole AlxandriaNicole 18-21, F a week ago

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    Hi I wanted to post that I am with a company in the US for all natural products for various medical conditions, one product that helps inflammatory issues. We have over 30 yrs of...
    carolgem carolgem 46-50, F 2 days ago

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    In the past 64 years since I contracted polio, nothing has been discovered to cure the later effects of polio, but Gabapentin for nerve pain (300 mg.) really helps me sleep at...
    julesgarden julesgarden 61-65 Apr 29

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    Hi I wanted to post that I am with a company in the US for all natural products for various medical conditions, one product that helps inflammatory issues. We have over 30 yrs of...
    carolgem carolgem 46-50, F 2 days ago

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    Hi I wanted to post that I am with a company in the US for all natural products for various medical conditions, one product that helps inflammatory issues. We have over 30 yrs of...
    carolgem carolgem 46-50, F 2 days ago

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    I have severe chronic pain in both feet, ankles and hips. I am 21. I had 5 surgeries on my feet between the ages of 15-16. I never fully recovered and I suffer daily.
    thatonecxnt thatonecxnt 22-25, F 1 Response May 20

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    Besides the tea, i own a coffee line that promotes weight loss, heals chronic diseases, and detoxes the digestive system.My brand has a variety of different flavors: Cappuccino...
    candyg82 candyg82 18-21, F 11 hrs ago

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    I'm starting to worry that I'm running out of treatment options. I have psoriatic arthritis and require monthly infusions of remicade and weekly doses of methotrexate. They were...
    padraig17325 padraig17325 56-60, M 2 Responses Apr 29

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    I love my wife. I must or how could I stay with her during her twelve years of illness and virtually no sex during that time. We no longer hike, bike or swim together. There are...
    greyballs greyballs 56-60, M 1 Response May 9

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    I broke my neck oh 28 years ago, in the years that followed I started being more and more uncomfortable. I have been diagnosed as a pain sufferer. It appears that when I broke my...
    bluezy261175 bluezy261175 36-40, M 2 Responses May 11

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    Life is hard for everyone . Stop crying yourself a river . Grow up . People like you suck the life out of everyone around you . Chronic complainers . Everyone has problems we just...
    May 20

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