I Got Diagnosed With a Rare Disease Today Cidp

A group for newly diagnosed people with any disease to share how you are dealing. 49 People

    Cidp: Invisible, Horrible

    It began last winter: weak arms, fatigue, shooting pains, for weeks, which turned in to months.  I went to so many doctors, none of whom offered anything more than "viral syndrome" or sinus infection.  I felt like no one was listening.  I felt like I was...
    jbnyc jbnyc
    31-35, F
    25 Responses Nov 23, 2009

    Nubee To Cidp

    I am fairly new to this problem. I swear the problem started after receiving a flu vaccine in 2009. Every month there after, except for July, I was sick with something. Pneumonia, Bronchitis, bladder and bowel problems. Then in early September, achenes to the hands and feet...
    japaga japaga
    6 Responses May 16, 2010

    Not Sure Yet What I Have!

    I am very scared because something is going on with my body. I am a 46 year old female. About 4 months ago I started to experience numbness and soreness in one foot. I saw my GP and she decided to do an MRI but that came back negative and normal. So she sent me to a neurologist...
    chirpybirdy chirpybirdy
    2 Responses Mar 9, 2011

    Cidp Drew's Story

    I was diagnosed with CIDP eventually in June 2011. I have written a blog to try and help others, hopefully they will get diagnosed quicker than I did so they don't get it so bad and the symptoms are reversible, for me the jury is out! (and the 80% recovery I am told about seems...
    Drews Drews
    51-55, M
    4 Responses Feb 25, 2012


    Hi, I'm 16 and my mum got diagnosed with CIDP about a year ago. The doctor diagnosed it pretty quickly compared to some of the stories that I've read on here and they put her on a weeks worth of IVIG. My mum responded well to the treatment but the specialist has recomended that...
    McKenzie16 McKenzie16
    18-21, F
    3 Responses Apr 28, 2012

    I Have Had Cidp For 6 Very Long Months

    i am a 57 y/o grandmother who began to have numbness in both feet and legs and drop foot in july of 2011. within 3 weeks the numbness was to right below my neck in the back and to my waist in the front. my doctor said i had neuropathy, since i am diabetic, and put me on neurontin...
    ahrmeme ahrmeme
    4 Responses Jan 26, 2012


    I too have just been diagnosed with this disease.  It started out as foot drop, and within two weeks I had severe muscle weakness over my entire body.  That was four months ago.  I have had 2 treatments of IVIG, which are not working, and will be starting...
    y8q5cum8iz y8q5cum8iz
    2 Responses May 29, 2010

    One Year Later

    I'm 17 years old and I was diagnosed with CIDP last February, and have been going back and forth to the doctor ever since. Not only is my remaining years of being "a kid" dissapearing, my job opportunities are being limited. Due to two drop feet I wear AFO's all through the...
    Camaro1chevy69 Camaro1chevy69
    18-21, M
    3 Responses Feb 15, 2012

    I Too Have Cidp

    Hi. For me it started with a backache that never went away. Then I developed a pain in my colon so, naturally my doctor tried to treat that instead of the backache. To make a long story short, after 6 months of misdiagnosis, and degenerating lifestyle (I was numb from the waist...
    liverpool101 liverpool101
    56-60, M
    3 Responses Sep 7, 2009

    MS And CIDP

    I was diagnosed with MS at age 12. Years later, I suffered with double vision for a year and a half. It was my last semester of college, I visited my neurologist expecting steroids, only to be sent to an ophthalmologist who told me they had no idea what was wrong with me. I went...
    Brookebmc Brookebmc
    26-30, F
    2 Responses Nov 3, 2013

    I Have Cidp

    I first experienced symptoms last spring.  I woke up with numb feet.  I had tingling, numbness, and a feeling like my feet were swollen.  I felt awkward and clumsy.  My doctor did not have any idea of why this was happening and took a wait and see attitude...
    Llinda Llinda
    46-50, F
    16 Responses Apr 15, 2010

    1 In 100,000

    My story starts seven years ago when my left foot dropped and I ripped a good pair of pants by stumbling and tripping on the sidewalk. I had two EMG's after that and was told to keep an eye on it. In 2007 my left arm dropped, and as a guitar player this was not acceptable. I've...
    springmang springmang
    3 Responses May 25, 2012

    I Got Gbs And Then Cidp

    I was a healthy Canadian guy up until I got my swine flu shot in November, 2009, my first ever flu shot I might add. One week later I tried to stand up from my desk and my quad muscles wouldn't work. Over the next few weeks the muscle paralysis / weakness spread into my arms. I...
    charlief charlief
    11 Responses Mar 16, 2011

    I have hepc , I took PegIntron ,

    Merck Schering Plough , approved by M. Hamburg FDA. Alpha2b interferon is killing me with CIDP . Hell on earth . Not 1 doctor would diagnose from fear of rich pharma . So I am tortured unto death . The Elavil will help keep you from crying out . This disease is terminal and I am...
    cherrycheek cherrycheek
    1 Response Jan 31, 2015

    I'm 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 Apr 30, 2012

    I Been Diagnosed With It At Age 5

    Right now I am 33 and been suffering from it my whole life.  Good luck and develop a support system because the best thing you can do is surround yourself with good people and keep your stress level low.  The key to remaining healthy is to eat a diet in high nutrition making...
    friendshipanda friendshipanda
    31-35, F
    2 Responses Mar 15, 2011


    Hello all, I am new here as well as new to CIDP. I have been suffering with this condition for 15-20 years but was only diagnosed in January 2012. It was a long road. The tingling and numbness is how it started, and I thought THAT was bad. Then the pain in my neck started. Now...
    Zapme2 Zapme2
    46-50, M
    3 Responses Mar 15, 2012

    I Hate Being A Burden...

    ...but that is what I feel like.  I have always been self sufficient and independant and now I feel like a burden to those I love dearly...
    Godwhispers Godwhispers
    46-50, F
    2 Responses May 15, 2011

    Actually, I Was Diagnosed About 10 Years Ago....

    Hi There! I was diagnosed with CIDP about 10 years ago and really wasn't too sure what to think about it. I was glad to finally have a diagnosis for the awful pain and tingling and fatigue that was ruling my life. It seemed to come about after a stomach surgery that I had back in...
    NurseKitKat NurseKitKat
    41-45, F
    4 Responses Mar 1, 2012

    I have acute motor axonal neuropathy.

    It's the evil stepchild of Guillain-Barré syndrome and the nasty cousin of chronic inflammatory demyelinating polyneuropathy whatyourdonotknowbecauseyouarenotme.blogspot.com/
    ChickenUnderwear ChickenUnderwear
    1 Response Jan 3, 2016

    Chronic Inflammatory Demyelinating Polynueropathy

    For the pastyear I have suffered with infuriating leg pains, back pains, tingling, numbness and burning sensations in both legs as well as my back. Being a diabetic, for a long time my family doctor just assumed those feelings were diabetic neuropathy, a common condition...
    bobbyswillow bobbyswillow
    36-40, F
    22 Responses Dec 9, 2008

    Growing Up With Cidp.

    Hey! My names Carley, & I'm a 15 year old girl. I would say I'm your typical music-loving, friend-caring, family-loving, boy-crazy, sassy teenage girl! Except one thing; I have CIDP. When I was 5 years old I broke my right ankle. After I got healed and my cast off, my...
    Carley3 Carley3
    13-15, F
    8 Responses Apr 26, 2012

    Rare We Are But Not Lost.

    Hello, I found out I have CIDP 4 weeks ago, was hospitalized to see a neurologist. I had no health insurance so was going to a clinic, they had no neurologist on staff the only way to see one was addmission to a hospital. 5 minutes after seeing neurologist he knew what I had...
    tonyd1914 tonyd1914
    61-65, M
    1 Response May 15, 2012


    I was diagnosed with cidp in July 2010. I was about to begin tx when I had to have open heart surgery. This delayed the infusions and I became very upset; however, I completed three days of infusions at the end of March. I am feeling very tired, nauseated, stressed and...
    Previn Previn
    66-70, F
    3 Responses Apr 13, 2011

    I Was Diagnosed With Cidp

    My name is Athena Quddus and I am 11 years old. It was shocking news that I had a rare condition called C.I.D.P. It started last year. Before the summer, I was an athlete- a soccer player, a track runner, and a field hockey player. During the summer, I had become increasingly...
    Athenaq6 Athenaq6
    4 Responses Feb 19, 2011
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