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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 43 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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    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 19-21 3 Responses Jan 25, 2008

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I have stage 4 chronic kidney disease since last nov. Of 2013,right before Thanksgiving. And I do have couple donors to help me but I guess the hospital is still gonna take awhile...
    letsbestrong letsbestrong 31-35, F Jul 20

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    First off for all of us suffering, I know your pain is very real, and I believe you and I'm praying for you! I stumbled across this blog tonight while doing research on getting...
    Pancreasfighter Pancreasfighter 41-45, F 6 days ago

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    I often feel like the most unluckiest person in the world. So much, that I see other people who say they are not lucky and I am jealous of them. I have no close friends, no one...
    NovaScotia902 NovaScotia902 22-25 1 Response Jun 30

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    Mine is actually called Honeymooner's Cystitis and it is flared up by intercourse. I wonder why I have it so young. After a year of thinking that I had frequent UTIs, I finally was...
    fairytalesandspiderwebs fairytalesandspiderwebs 18-21, F 2 Responses Jul 19

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    Ugh today has been horrible. I'm in so much pain and I can't do anything to get comfortable
    toinfinityandbeyondx3 toinfinityandbeyondx3 18-21, F 1 Response Jul 21

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    I've wondered it for quite a while, I do suffer from Generalised Anxiety Disorder so there's a bit of me that think it's more than that than CFS. I tend to ache all over on a...
    Reallifeperson Reallifeperson 22-25, M 1 day ago

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    I have chronic back pain. Currently due to retrolisthesis above my L5,4,S1 fusion
    merrym637 merrym637 51-55, F Jul 20

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    I have neurological Lyme disease and everyday is a struggle. My memory is so bad I forget where I and people, I also get really bad brain fog and have asperges since being...
    BrainnahGrace BrainnahGrace 13-15, F 2 Responses 4 days ago

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    I have IC and PFP. Had a total historetomey in the 90's at a early age. This was due to endometriosis. In the late 90's I became . Incontinant and never ever having any bladder...
    MaryBarbie MaryBarbie 46-50, F 2 Responses 1 day ago

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    I have been having a particularly hard weekend dealing with the loneliness of living with a spouse with chronic pain so I searched the web and found this site. As I read some of...
    hispainismypain hispainismypain 61-65, F 3 Responses Jul 12

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    I was diagnosed with Hidradenitis Suppurativa in January 2013. My first flare-up was under my right armpit. I went to the dermatologist thinking it was a boil that could simply...
    Amyhealing Amyhealing 31-35, F Jul 10

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 1 Response Jul 20

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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    Comprehensive fitness programming represents a coordinated continuum of healthcare management for the prevention of chronic disease and injury, which sets it apart from routine...
    aries3296 aries3296 46-50, F 4 days ago

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    Here are top 10 home remedies for Bipolar Disorder. 1. Fish Oil Fish oil rich in Omega 3 fatty acids is one of the few things that can help in the treatment of bipolar disorder...
    LovelyLilly13 LovelyLilly13 22-25, F Jul 3

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    About 2-3 months ago, I woke up with the most EXCRUTIATING pain in my arms and shoulder joints. I could not lift myself off the bed and could not put on socks. I was anxious...
    MysticTraveler MysticTraveler 51-55, M 1 Response 6 days ago

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    I was diagnosed 3 months ago after 10 long years of having this disease and not knowing what it was and never having a doctor that could tell me. The day I found out I was relieved...
    lunarobbins lunarobbins 22-25, F 1 Response 5 days ago

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    I was born with severe chronic neutropenia. I was diagnosed at 6 months. I'm now 20 years old, and have experienced a lot of pain, discomfort, week-long hospital stays, outrageous...
    fr0ncisco fr0ncisco 18-21, F Jun 30

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    I was diagnosed May 2014 after seeing my GP for hip and lower back pain. She referred me to an orthopedic doctor for further review who did an MRI of my back after determining I...
    Deelue Deelue 46-50, F Jul 12

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    I have MS and found out when I was 31, after having Optic Neuritis. I was stricken completely blind out of my left eye, like a light bulb went out. The blindness wasn't so bad. It...
    DarkwingGoslyn DarkwingGoslyn 31-35 Jul 13

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    My husband suffers from chronic wide spread nerve pain. He has been diagnosed with small fiber neuropathy, fibromyalgia, and myofacial pain syndrome. The best way to describe what...
    overwhelmedandexhausted overwhelmedandexhausted 26-30, F Jul 16

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    Hey everyone...I'm new to EP and thought I'd use it as a way to express things I don't talk about often. I am 25 years old and have been disabled and sick for the last 3 years. I...
    Buttercup789 Buttercup789 22-25, F 1 Response a week ago

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    I have a rare disorder called Loeyz-Dietz syndrome in a bad form. 28 surgeries. 3 open heart. Another coming soon. I can walk and appear mostly normal, but I suffer minimum 8/10...
    longcat4u longcat4u 31-35, M 2 Responses Jun 30

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    I am taking Spirolactone and think it's made it worse. Anyone have the same side effect?
    squirrelbounce squirrelbounce 36-40, F Jul 6

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    I am diagnosed with Schizo-Effective Disorder/ Chronic Depression, Audio + Visual hallucinations, and mood swings that can trigger the depression.
    MPost85 MPost85 26-30, M 1 Response Jul 8

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    Is there a way to prevent chronic panic attacks?
    NoraDysphoria NoraDysphoria 18-21, F 2 Responses Jul 11

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    My father was ill with chronic lung conditions all his life. He seemed old from when I was a child, breathless and coughing and spitting into the kithen sink. He could not play...
    dispossessed dispossessed 46-50, F 4 Responses Jul 13

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    I'm living with a chronic illness and thriving. I am an empathy. My life goal is to be a lightworker and counselor. I'm in love with the love of my life, but still married to...
    raven1026 raven1026 41-45, F Jul 20

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    My pain started when I was 12. They called them migraines. When I was 16 I had a headache that didn't go away for 2 years. Eventually my headaches were accompanied by joint and...
    eeeck eeeck 26-30 Jul 21

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    I have had FM since I was 15, now it is so bad and with the chronic fatigue all I do is sleep or cry. I am on so much medication and it still doesn't help. My husband is so...
    squirllykid squirllykid 46-50, F 4 Responses Jul 21

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