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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    Ent said i have chronic sinusitis symptoms are aching pain under and above eyes and top of throat burns sometime. have tried everything does anyone else have the top of throat...
    Dennyd58 Dennyd58 56-60, M Apr 11

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    Diagnosed properly five years ago in New York by a woman doctor that took the time to research my issues and ordered the correct tests. Came back to my home in Utah and the...
    Andreacurtis01 Andreacurtis01 46-50, F Apr 17

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    I have this but I have periods of denial which mess me up mentally because admitting to having such a disabling disease is so difficult. I go to college because my parents forced...
    fallenstar23 fallenstar23 22-25, F 1 Response Apr 16

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    Having an invisible illness & constantly being in pain is aweful. I'd like to go a day where I don't have to use codeine & where my hips & back don't hurt :(
    littlelib littlelib 18-21, F 3 Responses 3 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 3 days ago

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    Time to go on my run but I can hardly stay up right. this should be fun :/
    littlelib littlelib 18-21, F 1 Response 1 day ago

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    ...and I want others to understand it at least a little. Typically, people don't even recognize the word. Well, for those people: Anhedonia is defined by the loss of ability to...
    DepressedDemigod DepressedDemigod 22-25, F Apr 6

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    I have just been told I have chronic bronchitis / COPD. I'm a little scared. I don't know what to think.
    jaytee66 jaytee66 46-50, M 3 Responses Apr 20

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    Just A Rambling Thought In all the past lives I can remember, I was just a cog in the works. I was never a major player, famous, mentioned in lore, or written about in history. I...
    PastPilot PastPilot 51-55, M 1 Response 15 hrs ago

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    It's been such a long time since I have been on here. One of the reasons is because I live in chronic pain 24/7. I knew I wouldn't get better and that eventually, I would get worse...
    TwilightDream TwilightDream 36-40, F Apr 4

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    It's been such a long time since I have been on here. One of the reasons is because I live in chronic pain 24/7. I knew I wouldn't get better and that eventually, I would get worse...
    TwilightDream TwilightDream 36-40, F 1 Response Apr 4

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    I came across a book that I found quite helpful. It is for the chronic pain individual and their spouse. It is called "coping with chronic pain, a team effort!: for you and your...
    5354yyc 5354yyc 41-45, F 2 Responses Apr 9

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    I'm actually the partner with chronic pain. My wonderful wonderful boyfriend does everything he can to support me. To you partners, what's the best way that he/she show you...
    ashtonmallory ashtonmallory 18-21, F Apr 23

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    I am a 51 yr old woman who is/was very active, goong to the gym 5 days a week and always on the go! I haven't been diagnosed yet but from all of the Dr. Googling I have been doing...
    Louhouse1 Louhouse1 51-55, F Apr 4

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    So, I've been on a PPI for my GERD for 3 months and am just now encountering normalcy. I thought I'd try a Chai Tea Latte with Soy milk (I can tolerate soy) because miss my...
    marinderso marinderso 26-30 Apr 18

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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 4 days ago

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    Frustration That's how i am summing up my week with my husband's chronic degenerative disc in his back. After a pain pump implantation 3 years ago I thought life would would be...
    lovewillkeepus2gether lovewillkeepus2gether 36-40, F 1 Response Apr 10

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    For the past four years I've suffered from chronic migraine. For those of you who do, you understand it's not your typical headache and can be at times, debilitating. The...
    Hugmybear Hugmybear 46-50, F 2 Responses Apr 20

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    I suffer from chronic migraines and headaches and my family doesn't understand the pain I have on a daily basis.
    Indomitable6811 Indomitable6811 18-21, F 3 Responses Apr 20

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    This is the fisrt time I've posted. I'm feeling very down. I've been a paraplegic with severe chronic pain since 2003. I recently recovered from a pressure sore (after two years...
    gb3797 gb3797 61-65, M 4 Responses Apr 23

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    "Just saying 'No' prevents teenage pregnancy the way 'Have a nice day!' cures chronic depression."
    Justjonathan Justjonathan 16-17, M 1 Response Apr 3

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    In the 10th grade my parents told me they were splitting up. I was forced to choose a parent to live with; eventually choosing my Dad so I didn't have to change schools. At the...
    julieanne69 julieanne69 22-25, F Apr 4

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    Sometimes I push myself too hard trying to be the mom I think I would be if I weren't diabetic. My daughter is 5 and just wants to play with me,and even though she doesn't know it...
    hernameisME hernameisME 26-30, F 1 Response