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I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 43 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 3 Responses Jul 29, 2010

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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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    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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    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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    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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    Related Experiences

    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 Sep 25

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    I am 54 and have a strong family history of pancreatic cancer. My GI is a very well-known pancreatic cancer specialist who emphasizes screening and early detection, so he suggested...
    MP1960 MP1960 51-55, F 3 days ago

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    So I'm not sure if this is a side effect of Chronic Migraines but I've been experiencing some pretty debilitating dizziness for the past week. So I'd like some incite from other...
    WynonnaMarye WynonnaMarye 18-21, F 1 day ago

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    Since I was teen I have suffered chronic back pain. I have herniation's on my L1 to L4 discs and my sciatic nerve is pinched. The pain can be extreme on my worst days, I have been...
    Adelitasmile Adelitasmile 26-30, F 1 Response Oct 11

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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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    Hi all, been awhile since I have been on here. I have been suffering with CP since 2/2012. There have been some months in there where I was okay but for the most part not a day...
    Dani521 Dani521 31-35, F Oct 2

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    Hi, to be honest this is the first time I've posted about this or looked for chat rooms or anything really however I have CRPS. I am 28yrs old, Almost five years ago I was in a car...
    yalenahale yalenahale 26-30, F 5 days ago

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    Every Wednesday into Thursday without fail: I have a migraine.
    lalaloopsytrollpony lalaloopsytrollpony 18-21, F 2 Responses 3 days ago

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    I have become depressed due to pain. I feel like I cannot enjoy life or have the desire to go outside. My take on it is, if I am not feeling 100%, then I find no enjoyment in...
    jrason jrason 26-30 1 Response 1 day ago

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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 Sep 26

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    i am so sick of being numb. i cant connect with others anymore. i cant feel happiness. holidays are horrible for me because everyone is so cheerful and happy and here i am being...
    maddisonn maddisonn 16-17, F 1 Response Oct 4

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    Missing out on so much school baffled my parents. They did not know what was making me so sick until my diagnosis. Battling the pain and exhaustion has been difficult due to the...
    chlo3ann3 chlo3ann3 13-15, F 2 Responses Oct 8

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    I passed out yesterday and hit my head. It's like I can get a little better to the point where I can stand for a max of two minutes, but then it goes down hill. I just can't do...
    december789 december789 16-17, F 2 Responses Oct 9

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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 Sep 24

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    Induce stage injections could possibly be regarded for therapy of sufferers with myofascial pain as part of a multimodal method of pain management.Supplemental electronic material...
    Laurenazrj90 Laurenazrj90 31-35, M 2 Responses 11 hrs ago

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    I live with unbearable chronic pain every day of my life. I think about ending my life. I want so much to be comforted. I can spend the whole day in bed wondering who will do my...
    SorrowofHeart SorrowofHeart 51-55, F 4 Responses Sep 27

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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 Sep 29

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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 Sep 25

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    I'm so scared my husband will leave me to have children. He wants children, loves them, idolises them. I think kids are cute but I'm much rather enjoying seeing, learning and...
    CorruptedAngel CorruptedAngel 22-25, F Oct 4

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    I didn't really know at that time. I just thought I was a person who preferred the comforts of one's presence over others and that I was just really shy. But after checking for...
    NicoBunny6 NicoBunny6 18-21, F Sep 24

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    Ranger is my best friend, he keeps me company all day and night. We have put together a routine. You see I found him on Craig's list 9 years ago. He is our Srvice dog. We have...
    squirllykid squirllykid 46-50, F 3 Responses Sep 24

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    Milk Thistle’s therapeutic benefits have been known since ancient times, in fact, as far back as the 4th Century B.C! Generations relied on this gentle, natural, but most...
    pyeito pyeito 31-35, M 1 Response Sep 25

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    My body becomes an island floating in the souls great ocean...ghost ships collide and stars fall from their orbit to vanish in the cold abyss of silent space...I speak in...
    Bluematador Bluematador 46-50, F Sep 27

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    I've grown a tolerance to pain b/c I live with a chronic illness. If I say something hurts me, it really hurts
    xxalicerosexx xxalicerosexx 16-17, F Sep 27

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    It was a high dive accident. Funny thing was I was taking risks to overcome my fear of heights. I'd been on swim team and had done the dive successfully before. I did not tuck my...
    wisemoon wisemoon 51-55 2 Responses Sep 28

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    My two uncles had cancer, one of them died last year of brain cancer, and the other has chronic leukemia.
    DrowningInRed DrowningInRed 13-15, F 1 Response Sep 29

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    Lately, I've refused to take my medication at the onset of a migraine. They've come in waves near daily ranging from mild to severe. Anyway, the meds have they're own repercussions...
    sjmckstan sjmckstan 36-40, F Oct 1

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    I'm in so much damn pain today from me PsA. and I have to go to school now :(
    xxalicerosexx xxalicerosexx 16-17, F 1 Response Oct 1

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    I was diagnosed with IBS in my early 20s, I'm now 32. A year ago I was hospitalized set real times in a three month period. I had a colonoscopy and an endoscopy and was told that I...
    sonja82 sonja82 31-35, F 1 Response Oct 1

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    I'm reading this book to get more ideas about self-treatment and found that there's an operation "trephination", cutting a person's skull to let evil spirits leaves the body and...
    Concerto Concerto 22-25, F 3 Responses Oct 5

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