I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 46 People

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    Related Experiences

    Hey, Lately it has really been bothering me that I have no future at all... Due to chronic illness, I am unable to work, so all I'm able to do is sit at home every single day...
    Junkard Junkard
    22-25, M
    Apr 17
      I'm a Hepatitis B carrier from India. I have been looking for an online support group for HBV carriers in India but haven't been able to find one. So, recently I along with...
    themake1234 themake1234
    26-30, M
    Apr 17
    I am 19 now, almost 20... I haven't been on here for a few years, but I think I'll give it a go. My parents and I thought I had Chronic Fatigue Syndrome for 4 years before...
    Invisibleninja12 Invisibleninja12
    18-21, F
    Apr 17
    I had an extremely severe one last night. It started out light during dinner. I took relpax and toradol when we got home and went upstairs to lie down. The migraine got worse. I...
    sjmckstan sjmckstan
    36-40, F
    1 Response Apr 16
    I found out 2 weeks ago I have hepatitis B. I am currently sick. Have bouts of diahrrea, nausea, itching, and recently started experiencing neuropathy in my feet, exhausted all...
    pwarner44 pwarner44
    56-60, F
    Apr 11
    Looking for other survivors of S.S. for support, as I work thru this Big Bowl of ****. Am going thru integration therapy and deal with chronic PTSD as a result of the years of...
    Rhonda87 Rhonda87
    51-55, F
    1 Response Apr 6
    My pain is much improved today. The last two days I have had a lot of pain but exercise, relaxation, heat, and distraction have helped a lot. Keeping well hydrated is important...
    Doomflower Doomflower
    31-35, F
    Apr 6
    i hate that i can't communicate effectively. i know that my husband gets frustrated to the point of disgust. i just assume not talk to anyone. i have chronic pain and fatigue to...
    LITVET LITVET
    41-45, F
    1 Response Apr 5
    I have been in agony today. This morning my shoulder was an 8/10 on pain and now it is probably about a 4 and rising again. At baseline it is a 2-3/10. It barely registers. It...
    Doomflower Doomflower
    31-35, F
    5 Responses Apr 4
    Have a thing called Spondylolytis. It is when the fluid in my vertebral joints eats the cartilage instead of feeding it. With the cartilage gone my vertebra are not held together...
    boldtimer boldtimer
    66-70, M
    Apr 4
    Hello all! ( especially too my friends I already know here) I would like to stay in touch with you as well as new people feel free to add me and say hello. you can reach me...
    locked125 locked125
    26-30, M
    1 Response Apr 4
    I have a dual personality, from outside I seem like an upbeat and fun person, but people who I call friends don't know about the inner troubled self. I find it hard to keep both...
    lonelylifeindia lonelylifeindia
    26-30, M
    Apr 4
    I have been with my boyfriend for a year and a half, and he has been in prison for 7 months. We met after he did what he did, and I stood by his side through all of it. It is a...
    Littlefish1125 Littlefish1125
    26-30, F
    1 Response Apr 4
    I have posted about this alternative before, but I invite you to check it out. www.teen-concerns.blogspot.com
    Humanist321 Humanist321
    70+, M
    Apr 4
    I can't relate to what was stated above. I think I haven't experienced it at all, just yet. I usually fall asleep thinking such things. And what I often think every night is that I...
    Nyengenhe Nyengenhe
    16-17, F
    Apr 4
    I'm male but I got beat up by a girl. I didn't want to hit her cause I knew I'd knock her out. We were 13 at the time. She had been in many fights before and had never lost, and...
    Tegrais134 Tegrais134
    16-17, M
    Apr 4
    u know if u are suffring this,you have done anything for this. i know and i've done that too. this is nothing d*rty but truth. giving pleasure myself is best cure for get good...
    genjiipiexx genjiipiexx
    31-35, F
    1 Response Apr 4
    Id love to have one never had a little sister ep is ending id love one befor ep ends 804 901 2035 im a loving big brother
    teengirls teengirls
    22-25, M
    Apr 4
    Don't you think we NEED to have a drunken party??😕To say goodbyeeeeeeeeeeeee to Eeeee Peeeeee???😅I'm up for it - but I'm sure I'll be joining any virtual party from my chair...
    BSTisapain BSTisapain
    46-50, F
    1 Response Apr 4
    why am I posting stuff for. sometime I think I leaf it out. school was great today. to bad I don't have parents. cause it's parents day at school tomorrow. it's sad for me.
    kasydragon kasydragon
    22-25, F
    1 Response Apr 4
    Jealousy is one hell of a thing. My cousin and I haven't spoke to each other for YEARS and we used to be the tightly knitted ones. One evening, she texted me telling me she got...
    lunamcmxcix lunamcmxcix
    16-17, F
    5 Responses Apr 4
    I have an imaginary lover, but is strange the fact he is a giant teddy-bear (in real, i own him). I like to sleep on him and cuddle with him, to see movies with him and to have sex...
    beatwis beatwis
    18-21, F
    Apr 4
    Why is so much cymbalta hate and I have had none these side effects is there anyone who like myself who finally began sleeping as I once did and feel less to no pain only use C2's...
    Vocevaiver123 Vocevaiver123
    46-50, F
    Apr 4
    So, my Bulimia used to be about control....a way to stop my emotions. If I was upset or hurt I would B/P so I could somewhat stop feeling. I have started keeping track of what I...
    angelpumpkin36 angelpumpkin36
    36-40, F
    1 Response Apr 4
    New Home for the ILIASM Community Folks dealing with sexless marriages have -- for years -- sought and offered support at the Experience Project in the experience “I Live In A...
    ILIASMAllie ILIASMAllie
    46-50, F
    Apr 4
    54. I think I am generally insecure about my looks. I always think that no man will want to be seen in public with me, show me to his friends because I'm not that 10/10 Russian...
    UnicornsOfHope UnicornsOfHope
    26-30
    Apr 4
    Do you think the following blurb (from the About section on Experience Again) could possibly be written by someone who has been working on EP?? "A feeling of desolation...
    BSTisapain BSTisapain
    46-50, F
    2 Responses Apr 4
    52. Sometimes I worry about my sanity. I give my attention and focus to a man quite quickly- though, never my heart. I have only met him 2-3 times. But we talk and speak almost...
    UnicornsOfHope UnicornsOfHope
    26-30
    Apr 4
    If you have Facebook for Iphone/Ipod look someone up then go on the search again then scroll down to posts "name here" likes. You can see everything, also replace posts with photos...
    Paleandpolluted86 Paleandpolluted86
    26-30, F
    Apr 4
    Sometimes I wish Seth Rogen could knock me up so we could have a baby together and then he could play fetch with it like a dog. ...is this only a "Me" wish?? Or is this every girl...
    ERMAHGERD1 ERMAHGERD1
    26-30, F
    1 Response Apr 4
    I was on a spaceship in outer space with all of my classmates and we were sitting in a small theater area with a stage. The band MCR was playing just for us specially. I made an...
    MidnightMeraki MidnightMeraki
    16-17, F
    Apr 4
    It happened when I had a private class with a pre-school student. He is just 5 yo. Now, I do stupid and senseless actions/ reactions sometimes and boy... how I did it bad today. So...
    ChannelingTruth ChannelingTruth
    26-30, F
    2 Responses Apr 4
    hi guys not long till EP freeze's hope u found off places to go I have. two off them I've join. one is appliestome com . can't remember the other one name. but my user name is the...
    slivereyes slivereyes
    36-40, F
    1 Response Apr 4
    i need a wedge mistress or a girl wedge buddy. i am 17 and am very curious about wedges. i have never received a wedge but sometimes i pull up my underwear a little. i need someone...
    Manuel000 Manuel000
    18-21, M
    Apr 4
    i need a wedge mistress or a girl wedge buddy. i am 17 and am very curious about wedges. i have never received a wedge but sometimes i pull up my underwear a little. i need someone...
    Manuel000 Manuel000
    18-21, M
    Apr 4
    i need a wedge mistress or a girl wedge buddy. i am 17 and am very curious about wedges. i have never received a wedge but sometimes i pull up my underwear a little. i need someone...
    Manuel000 Manuel000
    18-21, M
    Apr 4
    i need a wedge mistress or a girl wedge buddy. i am 17 and am very curious about wedges. i have never received a wedge but sometimes i pull up my underwear a little. i need someone...
    Manuel000 Manuel000
    18-21, M
    Apr 4
    I have a lot on my mind I don't know if I will be able to sleep tonight
    littlerayofsunshine666 littlerayofsunshine666
    13-15, F
    4 Responses Apr 3
    I had a dream the other night in which I was Michael Jackson (never mind that I am a Caucasian woman in real life). I was staying at a villa with some people and for whatever...
    AlacrityMelancholy AlacrityMelancholy
    41-45, F
    1 Response Apr 3
    I keep visualizing my life. I can't tell if it's in the future or intended to be the moment I'm currently in. It makes me question every choice I've ever made. makes me regret the...
    nielle24 nielle24
    22-25, F
    1 Response Apr 3
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