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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 43 People

    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 1 Response Dec 31, 2009

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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 7 Responses Dec 10, 2007

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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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    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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    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 3 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I have hepatitis B. But I don't know where, when, or how I got it. I just turned 27 in June. And just a day before my birthday, I woke up feeling like I have been crushed by a lawn...
    confusedHepB confusedHepB 26-30, F Sep 14

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    When I was 12 years old I started having extreme headaches. My mom took me to the neurologist and they said I would grow out of them and didn't take my pain seriously. Later, it...
    WynonnaMarye WynonnaMarye 18-21, F 5 days ago

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    I'm pretty sure I have Lyme Disease... And after reading everyone's experiences, I am almost positive. I pulled a tick off of me about three years ago and developed the signature...
    Efmatthe9 Efmatthe9 22-25, F Sep 13

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    Each day gets harder and harder, coming into work, having no motivation, feeling like I am moving in really slow motion. I see everyone around me being successful yet I feel like...
    NiteOwlet NiteOwlet 22-25, F 1 Response Sep 20

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    The change of weather really gives me intense flare ups & muscle spasms. I am hoping tomorrow is better day
    zelda14 zelda14 26-30, F 5 Responses Sep 5

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    I will never sleep again. This pain is too great.
    SorrowofHeart SorrowofHeart 51-55, F 1 Response Sep 5

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    I'm on day 5 of constant migraines. So much nausea I'm just trying to get through today
    WynonnaMarye WynonnaMarye 18-21, F 4 days ago

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    So! Apparently this thing has a name! Who knew? I have been biting the skin on my fingers (mostly thumbs) since age 10 (or younger). I'm now 53 and still at it! I actually had a...
    shellygirl33 shellygirl33 51-55, F 6 days ago

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    There are many brings about of back again pain. Pain inside the lower back can relate to your bony lumbar backbone, discs among the vertebrae, ligaments around the spine andA...
    Laurenazrj90 Laurenazrj90 31-35, M 1 Response Sep 6

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    Hello, this is my first ever post. I found this site as I was researching what to do about the chaos in my marriage and the excruciatingly quick turn of events that I have caused...
    strugglinglove strugglinglove 31-35, M 1 Response Sep 4

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    I will be having a cervical (neck) steroid epidural on the 18th for my chronic neck pain. Then on the 22nd I will be having my the carpal tunnel release surgery on my left hand...
    Harley53 Harley53 56-60, F 1 Response Sep 10

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    Hello and so grateful to know I'm not alone. My husband had a hernia surgery about two and a half years ago and was diagnosed with chronic pain last year. The stories on this site...
    pressingon314 pressingon314 26-30, F 2 Responses Sep 16

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    I've had back surgery twice, the second time I had an artificial disc implant. Chronic daily pain. Take opioids but it helps only much. Anyone else out there like me? I battle...
    steverick steverick 56-60, M 1 day ago

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    I'm currently undergoing tests/scans etc to figure out what's going on with my health, and the next scan is looking for Endometriosis. I'm having one of those moments where I'm...
    GeorgieW2 GeorgieW2 26-30, F 1 Response Sep 3

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    WHAT IS - A BREAK DOWN OF IT: Personality disorder involve patterns of behavior, mood, social interaction and impulsiveness that causes distress to the one experiencing them...
    SassyBabe39 SassyBabe39 41-45, F 2 Responses Sep 8

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    My name is Karly and I am 25 years old. My family of 6 has a history of Depression, Anxiety, ADD/ADHD and sleeping disorders. My father, sister and I suffer from all the above...
    kcmac311 kcmac311 22-25, F Sep 16

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    I just looked up today the mental disability "social anxiety," or "social phobia," and after seeing many symptoms that match mine, i went on to take an online test to see how...
    Otokonoko Otokonoko 16-17, M 6 days ago

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    I'm a chronic over-thinker, so I try to keep things light. Tragic circumstances call for morbid humor. As inappropriate as it may be, that's how I deal. Some of the most heated...
    adianoeta adianoeta 26-30, F 5 Responses Sep 2

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    I took on a temporary job starting early February 2014, which required more typing than I had done since graduating college. I started having swelling and pain in my pinky joints...
    christinelinnet christinelinnet 22-25, F 1 Response Sep 3

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    My botox for migraines treatment was 2 days ago. It almost didn't happen because the price went up to $1,800 per treatnent. But it did and I have been exhausted ever since. I...
    sjmckstan sjmckstan 36-40, F Sep 5

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    From "Confessions of a Chronic Teenager" by Vermonster in the Experience Group, I Battle Depression. In the back of my mind, I know that it has to do with the lack of control...
    icDavey icDavey 56-60, M Sep 6

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    Girls who love girls and weed add me :) Chronicvibesxo no dirty pics pervs!
    highlycurious highlycurious 18-21, F Sep 7

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    Trigger Warning: Depression, Self-Injury, Drug Use I have suffered depression on and off for the last 6 years. For the last year, I have also intermittently had urges to become...
    voodoojoey voodoojoey 18-21, M 1 Response Sep 8

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    I've been diagnosed with chronic anxiety since I was 10 years old. I have panic attacks daily, I'm very sensitive to other peoples stress, and I hold it in so much that I end up...
    Ashtyn18 Ashtyn18 18-21, F Sep 10

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    I have just been diagnosed with narcolepsy but I don't think people can truly understand it. I always get responses such as: "your only tired when you want to be." Or: "You don't...
    Kelsey098 Kelsey098 16-17, F 2 Responses Sep 10

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    I had the botox treatment 10 days ago and the severity of the migraines have greatly lessened. I'm thankful for that! The confusion and forgetfulness (amnesia like symptoms from...
    sjmckstan sjmckstan 36-40, F Sep 12

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    Been reading about this leaf/extract-stuff from Asia, and it seems to be a pretty good source of relief for people with anxiety, or pain, or opiate/heroin addiction even. There...
    TtotheD TtotheD 56-60, M Sep 14

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    I can feel it. Struggling with domestic issues at home and at work, and I think depending too much on someone socially is not healthy. I always knew that but when you're swimming...
    BronzeEspada BronzeEspada 26-30, M Sep 15

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    I am pain. I feel useless. Worthless. I feel like my bright potential was unrealized and is forever gone. My chances are all used up. My troubles have become a mountain. Why am I...
    ToughEddie ToughEddie 36-40, M Sep 16

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    I thought i had multiple personalities to the highest severity, thought I was bipolar 2 ultra rapid cycling, thought i had a tumor in my brain, thought i was developing multiple...
    Ifeeluberish Ifeeluberish 18-21, M Sep 16

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