Post

I Have Chronic Inflammatory Demyelinating Polyneuropathy

Personal Stories, Advice, and Support 43 People

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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 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

    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

    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

    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

    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

    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

    Related Experiences

    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 Jul 23

    Your Response

    Cancel
    I feel like an old person sonetimes but I wont let me rusty joints stop the lifestyle. I will have to party with my spine all cracked. Taking vodka shots with my feet
    Alylovespuppies Alylovespuppies 16-17, F 3 Responses Aug 6

    Your Response

    Cancel
    I've been having more severe pancreatic attacks and seriously considering the Whipple procedure. Please tell me about your experience. What should I know about the Whipple...
    lindatran54 lindatran54 31-35, F 6 days ago

    Your Response

    Cancel
    Hello! I need any help I could get. So 4 months ago I had a pretty bad UTI. The antibiotics I was given made most of the pain go away but it did not remove all of the symptoms...
    m4shkaaa m4shkaaa 18-21, F Aug 5

    Your Response

    Cancel
    I hate suffering from this mess and to make it worse is that it was by someone else's hands. Someone who was supposed to protect me and love me. I hate my husband for what he did...
    Mjkittycass1985 Mjkittycass1985 26-30, F 1 Response Aug 6

    Your Response

    Cancel
    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 Jul 28

    Your Response

    Cancel
    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...
    BriGrace BriGrace 13-15, F 2 Responses Jul 25

    Your Response

    Cancel
    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 Jul 28

    Your Response

    Cancel
    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 1 Response Jul 25

    Your Response

    Cancel
    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 2 Responses Jul 23

    Your Response

    Cancel
    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...
    Lunaro23 Lunaro23 22-25, F 1 Response Jul 24

    Your Response

    Cancel
    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 Jul 22

    Your Response

    Cancel
    My GAD went untreated for most of my life so far. Please don't let your GAD go untreated, because in me, it led to severe depression where I was hallucinating and could only think...
    lizoutofwater lizoutofwater 26-30, F 1 Response Jul 31

    Your Response

    Cancel
    I have been in a relationship for only 3 months with my boyfriend. We are both in our mid 30's and currently trying to work on a long distance relationship. In the first month...
    1234dogma 1234dogma 31-35, F 3 Responses a week ago

    Your Response

    Cancel
    I had read somewhere that people who score high for the trait of conscientiousness do better in life because they don't procrastinate or delay getting their work done. It helps...
    MNRR MNRR 36-40 3 Responses Jul 23

    Your Response

    Cancel
    I had what I thought was piriformis until it became chronic, simultaneous with my toes becoming restless. That sounded more like RLS. Then I had an inspiration and started wearing...
    echinoderm echinoderm 51-55, M Jul 24

    Your Response

    Cancel
    I had headaches since I was like 7. When I was like 11 I started getting migraines. Medicine like Motrin helped then it stopped. I got a CAT scan & MRI. They said I have sinusitis...
    njgirll njgirll 16-17, F Jul 27

    Your Response

    Cancel
    "And women don't usually like to be looked at. They feel vulnerable, exposed. They are self-conscious about their perceived flaws. What they don't understand is that men don't see...
    JaneBloodyAusten JaneBloodyAusten 31-35, F 10 Responses Jul 28

    Your Response

    Cancel
    I'm trying hard to lose weight and get in shape, but my back pain is really making it difficult. I have two weeks until my first Veterans Assosciation pain management visit. I've...
    mohawkmom mohawkmom 22-25, F Jul 30

    Your Response

    Cancel
    After a childhood filled with severe pain, day after day in bed..... countless visits to Hospitals...Mri scans...specialist appointments which amounted to nothing, no one could pin...
    thedayyouwentaway thedayyouwentaway 36-40, M 2 Responses Jul 31

    Your Response

    Cancel
    I just noticed that I am one story away from the 500 stories award, the 'Chronicler.' And here it is. :D What is in the number 500? According to the Wikipedia, "Year 500 (D) was...
    mareliberum mareliberum 26-30 1 Response Aug 1

    Your Response

    Cancel
    When I turned 35 years old three years ago I was diagnosed with vertigo. I had two bad ear infections and my world was spinning. I thought I was having a stroke. I have been on...
    maddy0524 maddy0524 36-40 Aug 3

    Your Response

    Cancel
    http://www.avoidamigraine.com/migrainesymptoms-3.html I am kinda worried... when I first went to a doc about my headache, it was because I felt my memory was getting fuzzy, my...
    Barlong Barlong 22-25, F Aug 3

    Your Response

    Cancel
    I've started this little project called "My Life Almanac." What it is is a catalog of every day of the year, and under each day I collect all the information that I can about me...
    shannonymous shannonymous 18-21, F 1 Response Aug 5

    Your Response

    Cancel
    I am 25 & have severe endo. I had surgery a year ago where they removed it. It's only been a year & it's back. It is very deliberating! My last option is to go on a Hormone that...
    loloelisabeth loloelisabeth 22-25, F 1 Response Aug 12

    Your Response

    Cancel
    I wish you the best of luck. I'm 41 years old & suffered for years in pain. It was so bad I ended up in the ER every month keeled over in pain. I tried so many different things to...
    mylifeoutloud mylifeoutloud 41-45, F 1 Response Aug 12

    Your Response

    Cancel
    Two and a half years ago I was diagnosed with Ulcerative Colitis. Then a year ago it got bumped up to Crohn's Disease. It's funny I always knew something was wrong with me since I...
    Starkillera Starkillera 22-25, F 5 Responses Jul 22

    Your Response

    Cancel
    I don't understand the darkness of human nature. Why is it that when your chips are down, the human tendency is to gang up on that person and to put them down even more, instead...
    Solfeggio Solfeggio 36-40, F 5 Responses Jul 22

    Your Response

    Cancel
    When I was 18 I got diagnosed with chronic pancreatitis and have had lots of test done but still live everyday in pain. Is this normal for pancreatitis or has anyone have this...
    Josh3945 Josh3945 18-21, M Jul 23

    Your Response

    Cancel
    Not a lot of people seem to have heard about BDD. I've even had a few psychiatrists and therapists who had not heard of it. To quickly explain it before I really talk about how it...
    SailingwithSparrows SailingwithSparrows 22-25, F 2 Responses Jul 24

    Your Response

    Cancel