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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 44 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    In January 2012, I was a runner, hip hop dancer and did Tai chi. I was 38 yrs old. My feet began to hurt. Move forward to today, February 7, 2015, I use Smart Crutches to walk...
    TinkTimperley TinkTimperley 41-45, F Feb 7

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    Dear CFS: **** you! I hate not being able to think clearly. I hate not being able to play with my kids Saturday *and* Sunday. Instead, I have to pick one day and then use the...
    LookingForIt987 LookingForIt987 41-45, M 2 Responses Feb 11

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    I was diagnosed in 2010 just before my father was diagnosed with Liver Cancer. My doctor kept telling me that no educated gay man should ever have an STD. My last visit with him I...
    randyh0808 randyh0808 41-45, M 2 Responses Feb 14

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    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses 6 days ago

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    Constant stomach and back pains are great. Couldn't imagine my life without em'. Please note the sarcasm.
    AnaSofiaa AnaSofiaa 16-17, F Feb 18

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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 2 days ago

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    Best Way for Healing Chronic Back Pain http://luv2sex.theblogpress.com/?p=4106 - If you are suffering from any type of back pain, neck pain or sciatica, read on to find out...
    how2stayyoung how2stayyoung 51-55, M Feb 12

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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 3 days ago

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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 1 Response 2 days ago

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    Hello! This is my personal story of living with schizophrenia: I used to tell people "I have a bad brain." I am not going to say I suffer from schizophrenia but rather I endure...
    Amyloukay Amyloukay 26-30, F 7 Responses Feb 10

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    There's no way in this life time I will ever have a good relationship with my MiL. This woman is an utterly spoilt brat, age does not improve her. Two weeks after I married her...
    Purplelady2 Purplelady2 61-65, F Feb 11

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    I need help! I had a total thyroidectomy Nov. 7, 2014, before I got discharged from the hospital I went into severe hypoparathyroidism/hypocalcemia and stayed in hospital in ICU...
    rymagsnana rymagsnana 51-55, F Feb 11

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    Ehh. I wouldn't say it's messed up, but more like a scattered sleep schedule... I never get to sleep around the same times, or get the same hours of sleep every night, simply...
    LostandFading LostandFading 18-21, F Feb 12

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    I had my 6 month follow up and will cycle back on the inhaled compound antibiotics. I described how my chronic Athsma is in mo way under control and continually exasperated by the...
    MagLungPI MagLungPI 56-60, M Feb 13

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    I am 25 and struggling with having so much pain. It started 4 years ago. I have been to doctors. I've been on every meds. nothing is working and I have become worthless. I cannot...
    ultralord9000 ultralord9000 22-25, F 1 Response Feb 15

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    i need to vent im feeling angry and dark i feel like im not as good everyday is woth i feel like its harder to get through the day ialso feel like i need to vent or flip out im so...
    hannahabbie hannahabbie 46-50, F 1 Response Feb 17

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    I'm 19 and I have Menieres Disease in both of my ears. My disease has affected my hearing more than anything. I'm half deaf, I cannot hear anything out of my right ear, and my left...
    Gabyy17 Gabyy17 18-21, F Feb 18

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    Mentally am stronger, my body can not catch up with me. I feel trapped. Like robust energy and life and positivity is hidden under my exterior. When my exterior is "acceptable...
    BlueSkysAreCold BlueSkysAreCold 22-25, F Feb 20

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    I've had chronic osteomylitis in my femur since I was 13 which was wrongly diagnosed as junior arthritis until I was 16, I'm now late 30's with no signs of it going. I've had...
    cabella24 cabella24 36-40, M 3 Responses Feb 21

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    My disabled husband is getting a power chair next week. We're trying to get a ramp built so he can go outside. My cousin was supposed to come over today and build it. Instead he...
    kmgg kmgg 31-35, F 2 Responses Feb 22

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    Answers to the Question – Why Do I Have Back Pain (http://luv2sex.theblogpress.com/?p=4138 ) Want to know why you have back pain? Read on to find out more #backpaintreatments...
    how2stayyoung how2stayyoung 51-55, M 6 days ago

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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 5 days ago

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    I am that daughter, wife, sister, mom... I have always been the one to take care of everyone, it has always been my role. I'm the strong one in my family, I have 7 older brothers...
    Backbone44 Backbone44 41-45, F 4 hrs ago

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    To all who understand and to all that never will. Here is a poem for all the women who live with this invisible pain. I am tired of being your rag doll. I have spread myself far...
    rescueme99 rescueme99 41-45 3 hrs ago