Post

I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 41 People

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    i have chronic back pain. After using many painkiller and gel then heat and ice that never worked, i looked online how to treat it because it was awful. I learned that caffeine can...
    voslung voslung 36-40, M Mar 24

    Your Response

    Cancel
    I am 26 years old and I have chronic pancreatitis with a surgery coming up. My story started 2.5 years ago when I had a snowboarding accident. When I fell I hit my abdomen pretty...
    christine921 christine921 26-30, F 1 Response Mar 27

    Your Response

    Cancel
    I was diagnosed last year with a chronic pain condition that formed from me passing 4-8 kidney stones a year. Since I keep passing the stones I will always be in agony and when I...
    dirkablaze dirkablaze 26-30, M Mar 30

    Your Response

    Cancel
    I had chronic nausea in High school. Waking up every morning was really difficult, ending up in puking 65% of the time. I'm in college now and it came back.. except this time...
    adorablesarah adorablesarah 18-21, F 3 days ago

    Your Response

    Cancel
    Chronic pain is like having your own personal vampire that sucks the life blood from you. You can do things you enjoy but will pay the price of awful pain later or the next day...
    micmer micmer 36-40, M 2 Responses 2 days ago

    Your Response

    Cancel
    i was diagnosed of hep b in 2009 while i was in the university.. i constantly felt sick in the year 2006, when and how i had it i dont know. since 2011 i have been having series of...
    nanacquah nanacquah 26-30, M 1 Response 2 days ago

    Your Response

    Cancel
    Migraines have been plaguing my life for two years now. I was diagnosed with fibromyalgia and they soon started after that. I have ice pick headaches which have been bigger in...
    LouiseLondon LouiseLondon 31-35, F Mar 26

    Your Response

    Cancel
    Sitting here reading these stories brings me to tears. I am 33 years old and truly feel like my body hates me. I am always in pain and in tears anymore. I didn't quite know what...
    queenknight queenknight 31-35, F 1 Response Apr 8

    Your Response

    Cancel
    I personally don't have CFS but my mother has it and it's been one of the most difficult things to deal with on a daily basis. I have determined that my mothers stress levels...
    IamLerato IamLerato 22-25, F 1 Response 6 days ago

    Your Response

    Cancel
    oh the battle with the body has been a living nightmare from hell as you all know so well. I have so many physical problems, I just get that look from the doctors. urggg So I have...
    mommaceitta mommaceitta 51-55, F 1 day ago

    Your Response

    Cancel
    I have a brain tumour & epilepsy.
    sassyfrazz sassyfrazz 31-35, F 2 Responses 16 hrs ago

    Your Response

    Cancel
    Doctors Can't Figure Out What Is Wrong With Me.
    squirrelbounce squirrelbounce 36-40, F 1 Response 17 hrs ago

    Your Response

    Cancel
    I have been in chronic, constant pain for over 15 years now. I have seen a multitude of doctors, had several surgeries, many exploratory and even a spinal fusion of my L4-L5 disc...
    Mahala71 Mahala71 41-45, F 1 Response Mar 23

    Your Response

    Cancel
    I have chronic pain problems, and people treat me like dirt because they assume that I am have mental issues, not realizing how stressful it is to feel this way all the time. I...
    stphnmclrn46 stphnmclrn46 22-25 Mar 29

    Your Response

    Cancel
    I'm almost 51 and have no friends. I'm not involved in any activities, don't go to the bar anymore and have chronic pain so I don't work. I do crafts and household things. This is...
    natjk natjk 46-50, F 2 Responses Apr 10

    Your Response

    Cancel
    I was just diagnosed with this after several months of pain in my left heel. I have stomach issues and can't take anti-inflammatory medicine on a regular basis, so my doctor...
    livelaughlovedream3 livelaughlovedream3 41-45, F 13 Responses Apr 1

    Your Response

    Cancel
    I've been on this site now for a little while and am trying to create a support group for people who are working to cope with chronic pain in their spouse. This site would help...
    JustKeepSinging JustKeepSinging 26-30 Mar 31

    Your Response

    Cancel
    Since birth I was the "sick" child. My parents knew after they brought me home from the NICU, that my health issues wouldn't go away. I battle Chronic Liver Disease, Chronic...
    jazziNicole1994 jazziNicole1994 18-21, F 1 Response Apr 6

    Your Response

    Cancel
    My neurologist technically gave up on me...she gave me a referral to the headache clinic at the university of Michigan. I go there on the 19th of June... But....in the mean time I...
    kiesterdee6 kiesterdee6 22-25, F Apr 7

    Your Response

    Cancel
    My battle with chronic pain goes back 18 years to my first attack of acute hemorrhaging pancreatitis - a disease caused in my case by gall stones that blocked my pancreatic duct...
    ericgaudion ericgaudion 61-65, M 2 Responses Apr 7

    Your Response

    Cancel
    I'm 14 and I have P.F in both my feet and I was told yesterday that I'm really young to be experiencing this. I've been reading some of the posts and I see that some people had it...
    AnimeLover1387 AnimeLover1387 13-15, F 1 Response Mar 25

    Your Response

    Cancel
    I was just diagnosed with Forestier's Disease or DISH...Diffuse Idiopathic Skeletal Hyperostosisin in my lower spine. I've had weakness in my legs, lower back for the past 4...
    halley888 halley888 46-50, F Mar 26

    Your Response

    Cancel
    You may already know that acne is linked to the bacterium propionibacterium acnes, which nestles in the dark, oily, oxygen deprived crannies of our pores. Acne is also linked to...
    nelsson nelsson 41-45, M Apr 6

    Your Response

    Cancel
    I have been suffering from this skin condition for about 4-5 years. It sort of began slowly progressing as I was in high school and then further on. I used to think that this...
    Dianaangel Dianaangel 18-21, F Apr 12

    Your Response

    Cancel
    Ok so my story of mercury poisoning has been my entire lifes experience, and is still affecting me to this day. I just really wanted to connect with others who share this story so...
    awakekiwi awakekiwi 41-45, M 1 Response Apr 2

    Your Response

    Cancel
    I typed other stories before and deleted them as I keep trying to start fresh, to no avail. I sit here crying. I cry out of so much frustration; with God and myself. I don’t...
    myownproblem13 myownproblem13 31-35, F 4 Responses Mar 21

    Your Response

    Cancel
    I was diagnosed with DDD in 2004. They also found a bulging cervical disk. I was told that I needed a fusion from C3 to C5. I had that done in December of 2004. A month into...
    ChicagoSparky ChicagoSparky 51-55, M 1 Response Mar 22

    Your Response

    Cancel
    Mild cp, deformed hand, poor vision and hearing, poor teeth, weak heart, something undiagnosed with my brain (sort like a stroke but not), type 2 diabetes, psoriasis, soliios, ADHD...
    dacraww dacraww 22-25, M Mar 23

    Your Response

    Cancel
    I have pericarditis. Diagnosed 2 weeks ago, previously very fit and healthy. Cannot exercise and terrified it may become chronic
    rubytuesday69 rubytuesday69 36-40, M Mar 25

    Your Response

    Cancel
    Balancing in an unbalanced world. Walking on a tightrope with the wind blowing. Falling apart while simultaneously trying to catch the pieces. That's how I've been feeling the...
    greeneyes91 greeneyes91 22-25, F 1 Response Mar 29

    Your Response

    Cancel
    Anyone who looks at my page can see that I have been through some hard things. I battle depression; I am a cutter; I've had a suicide attempt; I loved someone that didn't love me...
    Imhurtingtoo Imhurtingtoo 18-21, F 2 Responses Mar 31

    Your Response

    Cancel
    Definitely. I'm so tired in school all the time idek why. I just feel so restless & constantly looking at the clock but time seems to be c r a w l i n g ugh I hate it. No matter...
    ELSAhugsyou ELSAhugsyou 18-21, F 2 Responses Apr 1

    Your Response

    Cancel
    I have suffered since age 16 from endo. I have three young children. During my third pregnancy, things went wrong. The placenta was outside of the uterus. My doctor went into a c...
    CPPDANCER CPPDANCER 36-40, F 1 Response Apr 1

    Your Response

    Cancel
    I have Lyme disease (not LYMES as some people tend to call it). I was diagnosed in November 2011. My first symptom was severe vertigo. Also, I experienced painful arthritis, brain...
    merelymandolin merelymandolin 31-35, F Apr 2

    Your Response

    Cancel