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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 44 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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

    Hi guys I'm new to this website I don't know where else to go I have no one to talk to apart from my dad but he's always telling me not to worry about it but I can't help but not...
    jdscanlon11 jdscanlon11 18-21, F 1 Response Mar 12

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    I have suffered with chronic lower back pain for over twenty years, for 15 of them i was pushed around the usual routes, given valium, diamorphine xrays,MRI scans and the rest...
    felixcat2002 felixcat2002 56-60, M 1 Response Mar 13

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    I have several chronic illnesses, but one that I don't much about that I have is MTHFR a mutation, anybody else here have it? If so what are your symptoms?
    TheStrangestOneOfThemAll TheStrangestOneOfThemAll 18-21, F 2 days ago

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    i was diagnosed with hep B when i was in college. almost 10yrs by now.. during that time I was so scared and i felt it is the end of the world for me. i even wrote all my...
    twistedgirl86 twistedgirl86 26-30, F 6 days ago

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    Please help if you can i know you all are struggling aswell (https://www.youcaring.com/medical-fundraiser/help-rachel-with-debt-from-late-stage-lyme-disease/328355#.VRUAZkKYLak...
    rabradley rabradley 22-25, F 5 hrs ago

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    I got diagnosed in 2012 when I lost all feeling in my legs. They did not catch it in time for it to be cured, they tried but failed. I was luckily already seeing a doctor who also...
    briannanicolex briannanicolex 18-21, F 1 Response Mar 13

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    People say "oh your lucky, I wish I could stay at home and not work" and I just want to slap them. Id give anything to be able to work again. Yes I'm home but I can't even help...
    Besillybeyou Besillybeyou 26-30, F 2 Responses Mar 17

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    anyone here from the Uk who has it? finding the nhs not that helpful ty
    mysmugcat mysmugcat 41-45, F 16 hrs ago

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    okay so I was with this guy for 3 years ; he was always cheating on me but he was cheating on me for the last year with the same girl. and then he cheated on her with a different...
    xoxokatesue xoxokatesue 18-21, F 1 Response Mar 13

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    Last wednesday I've learned I have chronic migraines. Although it is good news if you compare it to my assumptions of my Epilepsy worsening, it is still another handicap, which...
    Junkard Junkard 22-25, M 2 Responses Mar 6

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    I was told I had IBS about severn years go, my Dad may he RIP, paid for me to have private tests and hey presto, really sorry you have Chronic UC, also may have undertimined Crohns...
    theenglishrose theenglishrose 41-45, F 1 Response Mar 1

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    My cousin, who is a doctor, talked to me a few days ago about my constant tiredness. The thing is I go to bed before midnight, I don't even remember when was the last time I made...
    delusi0nal delusi0nal 18-21, F 1 day ago

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    I am a new mum who was diagnosed with LyP late last year. My doctors have given me literally no information on the condition. The dermatologist obviously thought it was...
    RJWest RJWest 36-40, F 1 Response Mar 1

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    My right knee. It hurts all the time. 24/7, and on a scale from 1 to 10, 10 being the most painful thing ever, I stay somewhere between 5 and 11. I've had multiple x-rays, an MRI...
    IAmJustAGhostGirl IAmJustAGhostGirl 13-15, F 1 Response Mar 11

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    Not Much of a Life It's been about 10 years since i broke my first vertebrae my L-5 then i broke it 3 more times and blew up a disc they did a fusion L-4 to L-5 to S-1 but the...
    2cool4school 2cool4school 36-40 2 Responses Mar 1

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    I've had chronic head, neck, end back pain for 8 years. My condition has no cure, only treatment. None of the treatment works completely. They say as I get older it can either get...
    Scoodaloop Scoodaloop 18-21, F 5 Responses Mar 12

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    I had RF ablation yesterday on my neck and all I can say is wow. I had a meltdown in the office before we even started & probably should have just walked out. I felt all the...
    Genesis922 Genesis922 41-45, F 2 Responses Feb 27

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    i haven't taken my meds for a few days. (I've just been really busy) today i am super emotional, wish i could do things to better myself & my family but feel powerless to do so bc...
    Platana2100 Platana2100 31-35, F Mar 6

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    I am in soooooo much right now surgery cannot come soon enough. I have 4 bad discs in my low back, and two in my neck from a car accident.
    kshine27 kshine27 26-30, F 1 Response Mar 6

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    I spoke to my doctor after i was shipped back from fighting in vietnam war in 1968. I was put on anti- physcotics , antidepressants for 25 years. I was off for 20 years and then...
    NavyVet47 NavyVet47 61-65, M 2 Responses Mar 10

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    I think that children should have some degree of say in their upbringing (as in attachment parenting). I was potty-trained way too early and as a result have various problems (such...
    spankediapered spankediapered 31-35, M Mar 11

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    This is me ALL winter...I just have a chronic case of the cold it seems til spring weather hits
    AustynMonroe AustynMonroe 18-21, M Mar 13

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    Im Julia, I was diagnosed with POTS 3 years ago. I went to the mayo clinic pain rehabilitation center last year. They tell you that you shouldn't talk about your pain because it...
    imafluffyunicorn imafluffyunicorn 18-21, F 3 Responses Mar 15

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    i would really like for some advice on IC. i was recently diagnosed with IC after years of going to my family doctor saying i was just getting chronic UTI's. after a while i knew...