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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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    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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    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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    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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    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 19-21, M 8 Responses Dec 10, 2007

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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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    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 1 Response 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 19-21 3 Responses Jan 25, 2008

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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 was diagnosed with CIDP

    when I was 12 and I 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 students...
    AlexPeyton AlexPeyton 18-21, F Nov 2

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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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    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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    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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    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

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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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    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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    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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    Related Experiences

    I wanted to share this. Envita Publishes Important Chronic Lyme Disease Treatment Study SCOTTSDALE, AZ--(Marketwired - December 16, 2014) - A revealing new study on chronic Lyme...
    mynameisjeff28 mynameisjeff28 26-30, M 3 days ago

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    My story isn't as bad as others yet but I fear it may end up that way.i had my first attack in October 2013 thought I was going to die from all the pain .Well the believe that mine...
    anythingelse anythingelse 41-45, F Nov 29

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    I just got diagnosed with CP and my doctor told me that right now there is nothing he can do. I asked him if I need to stay on a low fat diet and he said "eat whatever you want...
    GunnDawg GunnDawg 41-45, F Dec 2

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    I'm having a bad f-u-cking day. Saying my back hurts is an understatement. I have to study for my exams so no pain-killers or muscular relaxants. Bad dayyyyy. I just feel like...
    Sybilla89 Sybilla89 22-25, F 4 Responses Dec 13

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    So I'm going off of all of my medicines which admittedly is going pretty well. I'm rather tired of taking daily medicine and the birth control could be causing more migraines. I'm...
    WynonnaMarye WynonnaMarye 18-21, F 1 day ago

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    I had 5 surgeries between the ages of 15 and 16, they were on my feet. 3 on my left ankle and 2 on my right foot. I am now 21 and still have chronic pain, in my fractured/repaired...
    CountryQueen623 CountryQueen623 18-21, F 1 Response Dec 6

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    I am a 47 yr old man. I respond to posts that people as young as 13-15 post. I do this because I have raised a son, 19, and daughter, 21. I have my psychology degree, have been...
    mslvr01 mslvr01 46-50, M 6 Responses 6 days ago

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    It started out as red eyes, muscle weakness in the legs then a emergency blood transfusion, then told i have chronic kidney disease stage 3, then told im otherwise healthy but...
    shoshoneone shoshoneone 26-30, F 1 Response 5 days ago

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    I have a Demyelinating Disease. MS is also one of these diseases but mine is a new type. I have lesions scattered through out my brain and on the underside of my Corpus Collosum...
    BCulp38 BCulp38 41-45, F 1 Response Nov 23

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    Hello everyone! I am a 28 year old who has struggled with alopecia since I was 18 years old.... I put it aside for the most part of my high school years.. thinking it was all the...
    hstutz hstutz 26-30, F 2 Responses Dec 1

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    Grow hair faster Whether you’re in the midst of trying to recover your strands from a misguided cut or simply want longer locks, you may have a hard time patiently waiting for...
    dantodawn dantodawn 51-55, T 2 Responses Dec 11

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    Once more I woke up with agony, know that I'm in extreme pain so don't want to move. There's a tic tac in my head going fast, guess is just my heart beat trough my veins. No...
    lizzyWaterbearer lizzyWaterbearer 18-21, F 2 Responses Nov 23

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    My husband of 13 yrs has been living with chronic pain (testicular) for over 4 years now. The cause is due to a nerve disease. He's always been hilarious, the life of the party...
    watershed watershed 31-35, F 1 Response Nov 26

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    I've just come to the realization that I don't believe in chronic depression...? Given my family's alleged history with "chronic depression" it seems odd but... I just don't. Part...
    mlynnikens mlynnikens 22-25, F 1 Response Nov 27

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    Being young and struggling with severe chronic migraines and acid reflux.. I can tell you my life and physical appearance has changed like if I was some drug addict. Recently I've...
    littlemac64 littlemac64 22-25, M 2 Responses Nov 29

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    I been suffering from chronic pain for 17 years now. I have nerve damage in both legs. Looking to make friends to help each other when we are having bad pain day.
    MrShecter MrShecter 36-40, M 1 Response Dec 6

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    And over the years my benzo dose has increased. Proportionate to my becoming more and more of a chronic insomniac. I will not blame this strong and dangerous drug for this...
    lunadelobos lunadelobos 41-45 Dec 10

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    I'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F 2 days ago

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    Love this ❤ "Women don't usually like to be looked at. They feel vulnerable, exposed. They are self-conscious about their perceived flaws. What they don't understand is that men...
    SecretEscape SecretEscape 36-40, F 2 Responses Nov 25

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    My cat chose me 13 years ago. The first vet I took her to estimated that she was between 2-4 years old; it was hard to tell because she was so tiny and was taking good care of...
    lisabug75 lisabug75 36-40, F Nov 28

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    I am in the process of recovering from chronic depression, severe anxiety, and anorexia nervosa. I've attempted suicide more than 30 times but am no longer suicidal. I've been...
    losingNemo losingNemo 13-15, F 4 Responses Nov 28

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    So, I had a Botox treatment on Tuesday. It was more painful than usual. My neurologist says that's normal for patients that experience several painful migraines before a treatment...
    sjmckstan sjmckstan 36-40, F 1 Response Nov 29

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    sooo happy to have found this forum & find others who can relate...but am very sorry for everyone contracting RRV i feel ur pain, she sure is a nasty one, digs her claws in haha...
    jojoRRVbatcrazy jojoRRVbatcrazy 31-35 Nov 29

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    after the botox failed, my neurologist has decided to attack this at an "unconventional" standpoint..... he says I've done pretty much everything to fix them conventionally. he...
    kiesterdee6 kiesterdee6 22-25, F Nov 30

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    In one of my oldest good dreams, I climbed through the ceiling of my closet into a seemingly endless vertical tunnel with smooth white walls. I was maybe 6 years old when I had...
    bewareofpity bewareofpity 31-35, M Dec 1

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    love my pain, I've already been through so much physically and mentally. I got this. I need more tart cherry juice and oil of oregano. I suggest everyone have that in their diet...
    FinnAhGinn FinnAhGinn 26-30, F Dec 3

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    Seance September I have had the most agonizing pain in my left knee all the way down to my ankle. I have been to so many doc and they all tell me it's just swelling behind my knee...
    izzy33095 izzy33095 18-21, F 2 Responses Dec 3

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    I have OCD, AvPD, PAPD, and chronic depression
    amaui1 amaui1 18-21, F 1 Response