What Do You Think Caused Your Cidp/gbs?

    • Anonymous
      October 1, 2009 at 7:23 am

      please, if you would, take a moment to comment on what you think either caused your condition, or what factors you think may have made you susceptible to getting it.

      according to my doctor here at northwestern, dr. burt– there does exist an “environmental” factor. i am curious if there are common threads, a pattern.

      please feel free to consider all realms of your life preceding the onset of your first symptoms: stress, emotional difficulties, illness, insect bite, exposure, immunization, etc.

      i would really appreciate your responses, even if its a couple of words.
      thank you so much,

    • Anonymous
      October 1, 2009 at 9:44 am

      I was under a lot of stress at work. We had a company party 2 weeks before and cordon blue was on the menu (chicken mass cooked) . Also I was working on the roof of a large hospital and I was right next to the exhaust fan from the kitchen. My theorey is either from under cooked chicken or from the exhaust fan from the hospital.

    • Anonymous
      October 1, 2009 at 10:25 am

      I was diagnosed in Sept 2006. I first went to my primary and was told to exercise my calf muscles. When things didnt improve, I went back and saw her partner…a month later and after an MRI of my spine, sent to a nuero. The nuero diagnosed me within a week. I’m not for sure how long I’d had symptoms but certain to have had the numb toes for at least three to 6 mos prior.

      I’d been under going epidural injections into my spine for a disc acting up.

      I had viral mennigitis in 1997. Doubt there is a connection there.
      FAmily history of ALS so needless to say, I was terrified.

      I really think it was something triggered in my system by the invading epidural or maybe the flu shot I’d had in the November prior.

      My symptoms were subtle and slow…been on a slow progression since.


    • Anonymous
      October 1, 2009 at 10:34 am

      sometimes pittbulls attck thier owners. my immune system has not let anything past in years. that kydney infection let it out of the cage. a wild ferocious beast. but aside from the immediate cause, I think I have been doomed for this auto immune **** storm for sometime. I think part of it is body but alot is mind and soul.

    • Anonymous
      October 1, 2009 at 10:59 am

      A couple of months before GBS I was fine, enjoying the summer except for having chest pains I thought was indigestion. I had these pains on and off for about two years. Military doctors were treating me for acid reflux telling me that caused my chest pains.
      I finally got a referral to a civilian cardiologist in June 2007. He had a Pharmacologic Nuclear Stress test done on my heart. During this test I was injected with Cardiolite, a radioactive substance that allows a nuclear camera to take pictures of your heart.
      I was also injected with Lexiscan or Persantine (not sure which one), this medication will stress the heart the same way exercise does.
      This test is done if you are unable to walk on a treadmill long enough to increase your heart rate to the necessary level required for this test.
      I had three blockages in the heart and was scheduled for angioplasty in early September. I cancelled the angioplasty because I had a cold at the time.
      Shortly after having the cold I had low back pain I thought might be a kidney infection coming on. During the same time my left knee would give out while walking, my feet were going to sleep (tingling), and my fingers were tingling. I didn’t think of them all together as symptoms for anything.
      When doctors office called to reschedule the angioplasty I told them I still had a lingering cough from my cold. They said, “that wouldn’t affect the procedure”, angioplasty was scheduled for Oct. 10.
      The angioplasty did not work and I had to have open heart surgery. I was in hospital five days.
      Three days after coming home from the hospital I woke up at 4:OO AM to go to the bathroom and could not walk, I had tingling in the feet and lower legs. My husband took me to the ER. I was paralyzed from the chest down.
      I have asked myself, was it the injections for the test, the stress, the cold virus, a single occurrence or a combination of all?
      I doubt I will ever get that question answered but pray it can be answered in the future to help others.
      May you go through your stem cell with success.

      I also remember eating Kentucky Fried Chicken that I thought was undercooked.

    • Anonymous
      October 1, 2009 at 12:10 pm

      Hi Alice,
      Hubby who has CIDP had a bad episode of kidney stones, and had stents put in. He developed a major infection of his arm following the stent placement and was on IV antibiotics for two weeks. He then gradually developed weakness and atrophy of his right hand/arm over the next two years. Initially diagnosed with carpal tunnel. By the time he was properly diagnosed he had lots of axonal damage in all four limbs. He is pretty sure the infection was the trigger.

    • Anonymous
      October 1, 2009 at 12:20 pm

      [FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Alice, the cause for me would have to be the very beginnings of breast cancer. My immune system went into overdrive to try to get rid of the cancer. When I had my double mastectomies and all cancer was removed ( no radiation and no chemo to blame for this ), the immune system was still beserk.

      From what I’ve read on the NIH site and on published medical papers from Mayo, among others, 1 out of every 10 breast, ovarian, lung cancer patients will experience an auto-immune disease.

      Mine happens to be CIDP.

      Also among the reading I’ve done is the hopeful point that the auto-immune disease progresses at a rate consistent with how far the cancer had grown.

      I’m not so sure that’s correct. I’ve been stable, with minimal problems — pins and needles, electric charges, numb toes, dead shins, burning thighs — for two years now. But despite the gabapentin, these have not lessened nor has the discomfort been eased. In fact, problems seem to be “progressing” now. I can only hope, I suppose.[/COLOR][/SIZE][/FONT]

    • Anonymous
      October 1, 2009 at 1:00 pm


    • Anonymous
      October 1, 2009 at 1:16 pm

      While I’ve not been officially diagnosed, when I read the symptoms I thought two things were factors:
      Stress: I’m a commissioned salesperson who’s income is off over 70% this year. Bad enough that the “B” word (bankruptcy) is being considered.
      The other thing I’ve wondered about is that all this got much worse this past spring. I’d had a severe sinus infection for almost six months, had been on multiple antibiotics, and finally had sinus surgery, with a post-operative infection. Everything has gone downhill since then…

    • October 1, 2009 at 2:05 pm

      Kevie was stung by 3 bees in South Dakota and about 6 weeks later this started???????
      Dawn kevies mom

    • October 1, 2009 at 3:06 pm

      I ran in a 5k race 2 weeks prior to noticing my first symptoms. It was my first ever outdoor race having trained on a treadmill. It was 40 degrees out and raining and we started, finished, snacked and “hung out” in the horse barns of a famous horse track in Lexington Kentucky.
      I think I contracted a bug from the stables while my immune system was down after running the race in adverse conditions. I’ll probably never be able to race again. Darn it was such a short and unspectacular career. 🙂 🙂

    • Anonymous
      October 1, 2009 at 3:59 pm

      In my case there was never a clear answer as to what caused it….ran every test under the sun initially to find something. After my cancer diagnosis it was therorized that maybe that was the culprit but then it was also theorized that the CIDP caused the cancer to proliferate as well! Which came first the “chicken or the egg”? sort of thing.

    • Anonymous
      October 1, 2009 at 4:21 pm

      I was perfectly healthy.
      I had a colonoscopy and within a week I felt incredible fatigue in both my arms and legs for no apparent reason. Then the muscle weakness started and progressed until I knew something was seriously wrong. I was also under a lot of stress at that time.

      Our theory is some kind of bacteria was introduced into my system when I had the colonoscopy and my system could not fight it off.

    • Anonymous
      October 1, 2009 at 6:02 pm

      I really hate to blame vaccines for anything.. because of the world of good I feel they do.

      However, the year my sx’s started I recall going downhill following a flu vaccine.

      I got sick, and a while later my whole crappy bout of everything came on.

      It wasn’t my first year getting a flu shot, which is why I don’t want to say that was it.. but sadly, it may have been?

    • October 1, 2009 at 7:10 pm

      I have racked my brain over this for a long time and I intuitively suspect that something environmental is going on, although not everyone reacts the same way to all the poisons out there.
      Second Hand Smoke, Main Stream Smoke, Pesticides, Arsenic, Lead, Mercury and all the Heavy Metals, Undercooked Chicken, Vaccinations, Smog, Exhaust Fumes.
      CIDP has been associated with Diabetes but nothing has been proved conclusively.
      Pesticides are everywhere, Grocery Stores, Restaurants, Big Box Stores,
      Housing Complexes and you name it.
      Maybe these disease are a combination of systemic and environmental factors.
      Certain smokers get Buerger’s disease, but not others. Why? The only way to stop the progression of Buerger’s disease is for the individual to stop smoking.
      I have never smoked, but have been exposed to a lot of second hand smoke.
      My neuro ran a million blood tests. I ‘m curious about getting a heavy metals test done. Maybe it was the pest control co. using something to eliminate the pigeons around here. I think I got CIPD about that same time.
      I Just don’t know.

    • Anonymous
      October 1, 2009 at 7:11 pm

      I believe my GBS/MFS was triggered by stress (lost my wallet/passport while in Italy) coupled by ingestion of the campy bacteria (perfect storm). I also think my immune system had been compromised by a long bout of antibiotics in my 20’s.

      Since 75% of the immune system is in the digestive tract, and antibiotics (especially overuse) kills the good bacteria I believe my immune system wasn’t strong enough to fight both the stress and the campy bacteria. (Ever since that long antibiotic use, I’ve noticed what I consider minor digestive issues – e.g., lactose intolerance – and a good number of hard-to-treat sinus infections which required additional antibiotics – which I believe only made things worse.)

      Right now I’m working on improving my immune health, so I don’t have to experience this again. I wish someone would do a study on digestive health and GBS/CIDP/etc.

    • October 1, 2009 at 7:29 pm

      I have racked my brain over this matter and I suspect intuitively that environmental factors play a part.
      Main Stream Smoke, Second Hand Smoke, Pesticides, Heavy Metals, Undercooked Chicken, Smog, Air Pollution, Vaccinations, Antibiotics.
      Maybe a combination of systemic issues and environmental factors are the cause.
      CIDP has been associated with Diabetes, but nothing has been proven conclusively.
      Pesticides are everywhere Grocery Stores, Big Box Stores, Restaurants and Apartment Complexes, Condos, Townhouses, and Warehouses.
      I have never smoked but have been exposed to a lot of second hand smoke over the years. They started spraying pigeon pesticide where I live about the same time as the CIDP reared it’s ugly head. Arsenic and pesticides can be found sometimes in food and water.
      Some smokers get Buerger’s disease and others don’t. Why?

    • October 1, 2009 at 7:31 pm

      Didn’t mean to double post, but I thought I lost my original post.

    • Anonymous
      October 1, 2009 at 8:54 pm

      I think Emily had a predisposition to developing an autoimmune disease because it runs in our family. My grandma had diabetes, my cousin has epilepsy & I have endometriosis – all of which are autoimmune.

      But I think a combination of immunizations (starting with the chicken pox vaccine) & living in an apartment with high levels of mold (found after Emily was dx’d) caused her disease.


    • Anonymous
      October 1, 2009 at 9:35 pm

      This is an interesting post to read, simply because of the variety of ways we think caused it.

      My guess for my CIDP is that I got violently ill- stomach flu. A month or so later, I was sitting outside watching my son’s soccer game in cold, rainy conditions and developed an incredibly itchy rash on my thighs and whole backside where I was sitting on the blanket.

      Still to this day, when it is cooler (40-50 degrees) and raining, my hands get extremely itchy. Interesting enough, very cold dry winters do not make me itchy in the least.

      A couple months later after the rash, numbness started up my feet and hands and the rest is history.

      Not sure if it was the stomach virus, the rash, the combination, or something else- but it is all I have!

    • Anonymous
      October 1, 2009 at 10:03 pm

      Hi Alice,
      My symptoms first started in March 1998 and I wasn’t diagnosed until December 1998. I don’t know what caused my CIDP to happen because though I was never a physically fit person, I have always been healthy. So it’s like healthy one day and then just slowly running down like a clock until I ended up in a wheelchair.
      I do remember that I had made a move and the water was different where I moved to and it was making me sick, mostly diarrhea, but I usually have gotten sick from a change in water so that was nothing new. One of my infusion nurses thought the water caused my CIDP. With some things my memory has been effected, traumas can do that, and I draw a blank. I do remember that somehow my heart was effected and I had to wear one of those things you strap on to monitor the heart. I have no memory of what was wrong though because I don’t have heart problems.

    • Anonymous
      October 2, 2009 at 4:18 am

      i would love to hear from even more of you…

      from almost the beginning, doctors and then even us, seem to downplay the importance of the cause– kind of the usual shrug followed by, “it’s autoimmune,” and “we think some pathogen enters the body initiating molecular mimicry,” or “it’s idiopathic.” so the subject never gets explored. and i think a lot of us wonder– i know i have– and by the great amount of responses i’ve gotten, i imagine the subject is of interest to you too…

      i am strongly considering writing a book. at this point i am only in the beginning stages of the idea and outline– but the question of why WE think we got sick is of significant interest to me.

      certainly i have much yet to do medically for myself before i can throw myself into a book project. but just to share with you my basic idea– i would want tell my story while incorporating interviews by others who are willing. i believe the diversity of our stories would broaden awareness of how complex and diversified our presentations are. perhaps, it may help…

      so, for now, i ask with humility and gratitude, for everyone to come forward, if you feel comfortable doing so, and answering the question of this thread: why do [U]you[/U] think you got cidp/gbs?

      thank you so very much,

      if you prefer privacy, pm me…

    • Anonymous
      October 2, 2009 at 10:25 am

      I’ve been toying with the idea of writing a book for a few years now. I just don’t have the time (or quietness) to actually sit down & formulate full sentences, LOL.

      Maybe one day…

      Good luck with your project!


    • Anonymous
      October 2, 2009 at 2:03 pm

      Hello again Alice,
      I really don’t know what caused my CIDP, but yes, I have wondered about it. I worked as a housekeeper in a hospital and the last area I worked in (I had just retired before CIDP started) was Nuclear Medicine, was I exposed to something there, I don’t know.
      I really lean toward the flu shot with me. I did not have CIDP in 1997. Since I was a hospital worker and it was almost required, I got the flu shot Nov. 1997. I started getting symptoms in March 1998. Not being diagnosed yet, I got the flu shot in Nov. 1998 and about a week later I could no longer walk.

      I am open to talking to you when you are ready to start writing that book. You might want to dig up CODYSTANLEY’S CIDP STORY, which jfitzen posted for me. I am one of the old members, I go back to the old forum we lost to a hacker. I had a second part posted, JUST AS I AM NOW, but since my hands can’t do a lot of typing someone posted it for me and I can’t find it. I want to get that second part removed because I can re-write it much better.

    • Anonymous
      October 2, 2009 at 4:31 pm

      In my case ,I believe it was a flu shot in Dec. Followed by a colonoscopy in Jan then a Pacemaker in March. It was probably all my immune system could handle.

    • Anonymous
      October 2, 2009 at 4:37 pm

      I went to work on Sept. 7, 2005 feeling good. I was sitting at my desk around 9:30 and started having chest pains. That seems to be when my nightmare started.
      1. I had my first pneumonia vacine in 2000, as well as, the 3 shot hepatitis vacines. I had trigger finger and trouble swallowing after that but nothing else
      unusual. I had a flu shot in 04 and another one in Aug. 05.
      2. I went on a cruise to Belise in May before I got sick in Sept. I have always wondered if I picked up a nasty little bug down there. The doctor did find a very resistant H. plori bacteria in my stomach during testing after I got sick. It took several rounds of very strong antibiotics to clear it up.
      3. I has laproscopic gallbladder surgery in 2003. I had to be sent back to the hospital because they hit a nerve in my abdomen. The doctors put steriod shots directly into the area to stop the pain.
      4. We had a lot of bug killing chemicals sprayed around our pool that month and I remember the smell was very strong.
      5. Two of my 3 sons and their father has MS. We (their dad and I) were raised in one of the most toxic areas of the U.S., the northeastern corner of Oklahoma. The worlds largest lead and zinc mines were there and there were huge (6 stories tall) piles of chat (gravel) and the dust would fog off these chat piles on windy days. They used this gravel on the road in the area for years and most of the chat piles are gone now. The government has since bought out most of the area because people were getting cancer.
      6. I had a spinal fusion with hardware at the L4-L5 area of my spine in 1999 and had the hardware removed in 2000. Many symptoms of CIDP are similar to Cauda Equin syndrome. I wonder if those nerves were damaged in my surgery.
      I guess I really don’t know what caused my nightmare and I have gotten progressively more disabled.

    • Anonymous
      October 2, 2009 at 6:28 pm

      Absolutely no idea.

      Mine came on so slow, I could not pinpoint a “starting time” I just noticed my big toe was numb one day in July of 1989.

    • Anonymous
      October 3, 2009 at 5:59 am

      as i have been reading these varied posts, i realized that i haven’t shared my experience– why i think i got cidp.

      i was under a tremendous amount of stress in the months (maybe even the last few years) preceding the onset of my symptoms– and then in early october of 07, i came down with a case of shingles. by dec 07, i began to feel that my toes were sightly numb. it just got worse from then.

      i’ve often wondered if allowing myself to be so stressed for so long, set my body up for whatever causes the body to shift to autoimmunity. interestingly, the last event along a line of stressful events was the death of a dog that i felt a particularly deep love and connection to. her name was Mia. she was a 14 year old rottweiler and besides her kidneys giving out, she was also diagnosed with stomach cancer. all i could do for her was try to keep her comfortable until i no longer could. the next weeks wiped me out emotionally as i gave her subcutaneous fluids and she wore a fentynal patch. after a day and night of her clearly suffering, i put her down… that was on dec 6th 07. my symptoms began 4 days later, on dec. 10th… i’ve often thought that this last huge stressor was the final event i could manage– i just fell apart, in more ways than one, after that…

      anyway. sniff sniff– i feel better now of course. i feel i grew up during this trying illness. i feel i’m a better person now. if only i could take the lessons i’ve learned, but [U]without[/U] this illness as a constant reminder– i’d be the happiest woman on earth 😉

      keep your stories coming !! i plan to work on categorizing them and may need future clarification. clearly, there will be many in the “i don’t really know” category. but even those of you who do not really know, the information you provide is invaluable. wouldn’t it be remarkable if a pattern emerged from the “i don’t know” stories.

      thanks again and know that i will post what i come up with eventually and will welcome your insight and corrections.

      with warmth and gratitude,

    • Anonymous
      October 3, 2009 at 10:14 am

      I was also under tremendous stress almost continually for the 10 years prior to my illness. Divorce in 1995, youngest son traumatic brain injury 1997, father died 1998, difficult daughter moved in with me, started a new business, back surgery 1999, another back surgery 2000, sold a lifetime of things to move to Ireland, did not work out and had my heart broken, moved to FL., 2001, sold house in OK. 2002, started a new job and bought and renovated a house, 2003, gallbladder surgery and chest pains and got hit in the top of the head with a sheet of plywood with lingering neck pain, and my two older sons were diagnosed with MS, 2005, then suddenly struck down with this problem, 2005.
      Looking at the stress my body was enduring, no wonder it gave up!!:eek:
      Alice, I hope you keep tabs on how many had a back or spinal problem. I wonder if there might be a common thread there.
      You do not know me yet, but I am cheering for you and watching your progress.

    • Anonymous
      October 3, 2009 at 10:25 am

      Hi Alice, my name is Ms. Judy. I’m a new member but oh so grateful I found
      this web sight. I already feel I’m getting to know everyone. Background-I’m
      61 years young and was dx with CIDP about March of ’08. I had gone to a
      neuro in St. Louis about 6 mths prior with lesser systom and he was about as much help as a frog! When I finally saw my current Dr. Patty Nememth, about 6 months later at
      St. Lukes Brain and Spine Center in St. Louis, I had severe pain in both arms
      and legs, numbness in arms and legs, constant nerve tingling and twitching,
      loss of balance, and no refluxes in both legs and the list goes on. My doctor was like an angel to me.

      She dx me with Cidp with mag. and after some test and started me on IVIG treatments right away. They have helped so much with the pain especially, however after about 4-5 weeks I’m ready for more.

      What do I think caused my condition? No. 1 – Stress!!! I was under alot of
      it with one of my son’s for about a year prior to my condition. I also had
      severe chest pain and was hospitalized and had the neuclear test done to,
      twice! The first time they said it did’nt work?? My test were neg. so they
      did an upper G.I. and a colonoscopy. About 3 years ago I had surgery for tendonitist on my arm and a nerve replacement and I received about 4 cortizone shots. No. 2- Surgeries!!!! Since 1976 I’ve had 12 surgeries.
      No. 3- Environment!!! I love to garden, flowers are my passion. Now I realize
      the things that were making my garden beautious were probably causing me great harm.

      I wish you all the luck in the world with your book and if I could be of any help
      please let me know. Keep the faith-Attitude-positive attitude always and faith.

      Ms. Judy

    • Anonymous
      October 3, 2009 at 11:32 am

      Hello again Alice,
      This is my third response, but I just wanted to add that though I don’t know if STRESS can cause GBS/CIDP it can play a BIG BIG factor. I do STRESS OUT big time and I have gone through MAJOR stresses, just to name a few, the death of my “baby”, my beloved dog Stanley, my father’s death in 2000 (progressive years for me) and my mother’s death 2007. The GRIEF and STRESS of losing my mother destroyed my motivation to continue to strive to recover.

    • Anonymous
      October 3, 2009 at 11:46 am

      i am deeply sorry for all of your losses… you’ve been through it…
      i’m sure you and i will be in touch–

      sue– you’ve had your share too. at the moment, i’m keeping my mind open but am already beginning to see some interesting “possible” patterns.

      best to you ms. judy.


    • Anonymous
      October 3, 2009 at 3:19 pm

      I have a three year old with cidp and I have thought a lot about what caused this. Selah had Fifth’s disease and they believe that this caused her gbs/cidp and her arthritis. She is also a very thirsty person and we gave her a lot of propel water because we did not want to give her juice and then realized that propel contains Splenda. I have researched artificial sweetners and they are terrible. The quality of the water at our house is also terrible and our local water dept still has not fixed it. It contains a lot of sand in it which the health commisioner says won’t hurt anyone.

    • Anonymous
      October 3, 2009 at 5:18 pm

      I’m trying to remember when I first notice the slight numbnss in my feet and than it would go away. I believe it was “2006” after my younger sister died of lung cancer. I BELIEVE IT IS STRESS. In the last 12 years I’ve had many stressfull events happen in my life.

    • Anonymous
      October 3, 2009 at 6:06 pm

      My family (wife) has a long history of autoimmune diseases and we believe Julie Ann was predisposed and the 5 mercury fillings started the process.

    • Anonymous
      October 3, 2009 at 11:25 pm

      But, it’s pretty clear a LOT was going on IN me. that wasn’t detected until later.
      Late winter ’02, came down w/a delightful bout of pneumonia. First antibiotic I could NOT keep down [augmentin-caused projectile vomiting]. Never start a med on a Friday? Had to wait to get onto an alternative -CIPRO. Was on my third course of it when things were deemed all clear. But the coughing and congestion continued for four months from the start. In the fifth month, started w/the numb toes. W/in 2 weeks I saw my GP as it’d spread to my hands and the entire feet. Made a neuro appt. Week after that? The pain and numbness was just above my ankles and wrists. Went to ER -waited 14 hours to be seen, by then P&N was at the knees and elbows. Saw a different neuro on call and ‘he deemed it a mere neuropathy’! Cancelled the original Neuro Appt. It kept getting worse and concerns were ignored-just upping my meds to the point where I was sleeping 18 hours a day, at 1-2 hour stints. I went out and got second and third opinions which got me the CIDP moniker. Then put on IVIG, which worked wonders for me? But lots of damage was still done. Some nerves healed – even tho I’d not expected them to. I’m lucky?
      Almost two years to the exact date after the pneumonia started, a lump was found in my breast… w/subsequent surgeries, etc. That pesky cancer could have been ‘hatching’ for up to 5 years prior to detection, and I’ve a family w/a history of varied cancers. Why I wasn’t tested in this quarter w/all the CIDP tests? I’ve no clue. But it’s possible that results to the right tests would have shown negative anyways.
      Year after that, thyroid was pronounced dead. And this year? Well the jury’s still out, but I believe I’ve a couple more problems that go with immune issues.
      Saw the original neuro I’d make and cancelled at first with as one of those second opinions[The one who WASN’T on call at the hospital at first?] and am doing mostly OK.
      This spring tho? Must’ve had a relapse or something as I fell twice resulting in major surgery for serious bone breaks and rehab. The x-rays are definitely ‘interesting’?
      The more I learn, the more I wish that some key tests were done at key times, however. This is life tho. Hindsight doesn’t change anything.
      We all go forward as best as we can. Well, that’s me.
      Hugs and good things to all!

    • Anonymous
      October 5, 2009 at 12:09 am

      In the 70s, my father got Hep A, and I got a gamma globulin shot from the doctor. I fainted almost immediately after, and within a week I could barely walk. The doctor diagnosed mono. For the next 2 yrs. I had a lot of trouble with my legs–falling, tripping, difficulty getting up stairs.

      Then in the 1994, after a brief throat infection (with a very high fever), I was diagnosed with GBS. When I relapsed in 1995, I found a new neurologist who suspected that it may have been brought on by zoloft. He’d seen a few other people that year who start on zoloft and cam down with CIDP.

      I suspect now that I had either GBS or CIDP in the 70s, and not mono.

      But definitely not stress. I wasn’t any more stressed out than normal when I was diganosed with GBS in 94.


    • Anonymous
      October 5, 2009 at 7:47 pm

      When my dx was anti-GD1a antibody I blame years of eating no very cooked
      chicken, blamed to have campylobacter jejuni living on them
      (FDA has lot of info on it and Guillain Barré on the web).
      But now that I have anti-MAG on the top, besides the GD1a, I do not know.
      I think is ereditary, my grandfather died with pheriperal neuropathy at 60,
      blame to intoxication from the welding fumes (he was a welder), but in those years (1960)
      it was not known anything about autoimmune diseases and anti-MAG, GD1a, GM1, antibodies.

      Pablo, Uruguay

    • Anonymous
      October 6, 2009 at 12:20 am

      I had upper chest congestion and was given ZPak. 5 days after I finished taking it I broke out in blisters all over my body. I started having balance and breathing problems. They said I had serum sickness. I was put in the hospital and they also were worried about Steven Johnson because of the blisters.

    • Anonymous
      October 6, 2009 at 3:30 am

      I believe my husbands CIDP was caused from mold. My husbands work was rumored to have mold behind the walls when the company bought it. Two other people have also developed the disease. My husband was also under a lot of stress from his job. He was the sr. design engineer and had stress from time limits on contracts. He past away last year. I also believe he could have gotten it from a flu shot. He had gotten one every year because his company paid for it. I know I am afraid to get a flu shot.

    • Anonymous
      October 6, 2009 at 1:31 pm

      I read a few of these posts…will have to read more later when I’m home.

      I saw a few about stress and thought I’d add mine.

      However, right before the diagnosis…I didnt have alot of stress…I was doing fair.

      But…from about 1990 to 1999, I was married and in a realllllllllllly bad marriage. My exhusband takes the cake for being the king of buttheads.
      The stress I endured from that marriage made me the strong willed woman I am today…but, if this is stress related…well, then, there you have it.
      Except that…it took 5 yrs to show it’s ugly head.

      Stress…boy, I’ve had my share. And then some.

      Makes me so super greatful for my life now…my husband and my son…and everything that surrounds them.

      I still think it was the epidural injections…I just have that feeling.

      Alice, your book idea is great…you are an awesome writer, I know you’d do well. One thing at a time. 🙂


    • Anonymous
      October 6, 2009 at 4:48 pm

      My possible causes were in order of events:

      Surgery scar tissue – April 2005
      (numbness started after this but was attributed to a trapped nerve)
      Flu shot – November 2005
      (numbness progressed leading to further belief in the trapped nerve)
      Surgery on a trapped (peroneal) nerve – December 2005
      (much of that leg was numb just due to the surgery… or so I thought)
      Bronchitis – January 2006

      And February 2006 started the creeping numbness now known as CIDP beginning first on the right side where the surgery was and then progressing to both sides up and down leaving very little untouched. 😀

    • Anonymous
      October 6, 2009 at 10:31 pm

      Alice, girl, you challenge me all the time and I am oh so grateful!!!:rolleyes:

      After much reflection, I believe the various foreign elements introduced into our environment and into our foods are the main causes for me. I developed allergies at an early age and still struggle with allergy induced asthma. I am particularly susceptible to insecticides/pesticides and when I think about how much of that was in our foods before we (consumers) became more aware, I’m convinced it is part of the equation. Add to that all the preservatives, artificial sweeteners, etc and I think, for me, that environmental combination is the “gun”. I also think stress was the “trigger”. My life sure hasn’t been boring 😮 and I have many, many experiences that would make for many, many made for TV movies!:D

      Glad you are home!

      Happy Birthday tomorrow!!

    • Anonymous
      October 7, 2009 at 7:44 am

      i had to giggle when i read your post linda– “trigger and gun” spoken as a true texan 🙂

      i love that more folks are thinking about this and writing here– as i mentioned before, in anther post, when we had 35 responses, i did put the data together and displayed the results in a table. then i had trouble posting it because it was too big a file.. i will wit a bit longer and then redo my document. i’ll find a way to post it. one way would be to post/publish it n my website, this way it would have an accessible url… but i worry that some may feel it would be a breach of confidence as i use your user names… but then again, this forum is public and anyone can read it… hmm, unless someone objects, i think i will soon put it on my site and provide the link here.

      best, alice

    • Anonymous
      October 7, 2009 at 11:37 am

      Someone else mentioned something that really has made me think. This past spring we had a water leak in our master bath, and I had to demolish the bathroom to repair it and replace things. When I tore out the shower I was exposed to a really, really bad black mold situation. Backed out of the bathroom, went and bought a respirator, clorox, etc., but received some exposure. Things (physically) got a lot worse after that. I had kind of forgotten about that until the post sparked my memory. May not have anything to do with anything, but I’m going to mention it during my appt tomorrow.



    • Anonymous
      October 7, 2009 at 6:11 pm

      Not long before the onset of my first symptoms, I had a brief two day illness that I remember particularly because I was on vacation and had to spend a day in bed. When I read about the molecular mimicry theory of autoimmune disorders, I thought back to that event. My old college roommate has MS, making us both wonder about the odds of the two of us, decades later, both contracting demyelinating autoimmune disorders. Could we have had some sort of shared toxic exposure? Maybe, but we lived in relatively pristine northern New Hampshire. I’m sure most all of us here have thought about what could have caused this illness we have. Myself, I find the molecular mimicry theory most intriguing, but then, is there a reason why we might be susceptible to this sort of molecular mistake? I read somewhere that nearly one in thirty persons has an autoimmune condition, which makes them much more common than I would have expected. Have they always been so prevalent, or are higher rates due to better diagnostic skills? Lots of people are looking for explanations, raising lots of questions, which may not find answers anytime soon.

    • Anonymous
      October 8, 2009 at 5:13 am

      [QUOTE=GaryD] I read somewhere that nearly one in thirty persons has an autoimmune condition, which makes them much more common than I would have expected. Have they always been so prevalent, or are higher rates due to better diagnostic skills? Lots of people are looking for explanations, raising lots of questions, which may not find answers anytime soon. [/QUOTE]

      I wonder if that number takes into account people with allergies… my mother has severe seasonal allergies and my doctors have always considered that “an autoimmune disease in the family”. I also think that with better diagnostic capabilities fewer doctors are attributing the vague symptoms of many autoimmune diseases to mental illness. At least from what I’ve seen it seems like more doctors are willing to say “well lets run a bunch of expensive tests to see if you have something rare” rather than “you’re just stressed out – go talk to somebody.”

    • Anonymous
      October 8, 2009 at 5:44 pm

      Untreated neurological lyme disease and co-infections start the ball rolling. It’s still rolling.
      I’m off to the hospital next week for surgery to removal nodules from my lungs for biopsy.

    • Anonymous
      October 8, 2009 at 5:56 pm

      Too Freakin many Flu shots, Allergy Shots, Immunse system Modulation.
      It was slow and sneaky.

      Followed by a Surgery that opened up Pandora’s Box.–Tim–

    • Anonymous
      October 10, 2009 at 12:26 am

      It was bound to happen…flu shot for over 25 years, allergy shots, shots for medical problems. the year fbefore this happened, i was already experiencing some muscle pains, and the flu shot brought the whole thing to a hed, and ravaged my body.
      I’m not allergic to eggs, i eat them at times no proble m. but i am severely and immediately allergic to numerous chemicals, pesticides, herbicides, rodenticides, food additives, sugar substitutes, dyes, househlold and industrial chemicals. I’ve been hospitalized for severe food poisoning in the past.

      Remember them bragging on tv about ‘all that they had accomplished in their research and how it was going to be the “big breakthrough flu shot” that would include so many strains, etc’. Well, a few months later, they were on tv again stating that it had been a failure!
      Well, it broke me. And that’s for sure! Body and mind.I’m just lucky to be alive to tell the tale.

      And since then, I have come to realize that I am NOT the guinea pig or lab rat of THE GREAT GOD SCIENCE, and since they did this to me, and can’t fix me, I have’t got any more faith or respect in them.


      In the fall of 2007, the town department sprayed the elm trees in my backyard with pesticides without warning me first. This was just 20 feet away, and my windows were all open at the time and my house filled with these toxins. I have asthma and chemical allergies, etc. and I remember having an asthma attack, going outside with my mask on and telling them to stop spraying, and then closing the windows and being very sick for a couple of weeks.

      A few weeks after this, I rode my bike to get my annual flu shot. (I was in good physical condition, rode a bike daily, hiked regularly, an outdoor person.) The symptoms started immediately after my flu shot, with a severe headache which lasted a week, then tingling in my arms, icy-cold chills & severe pain in spine, then trouble walking, severe muscle contractions, pin-point rash, swollen glands, drooling, numb tongue, blisters in my mouth, no sense of taste, neck pain, hypersensitivity to light and sound, sudden nosebleeds, couldn’t tell hot water from cold water on hands or feet, foot-slap & stumbling & staggering when walking, bowel incontinence, extreme dizziness at all times, slurred speech, loss of ability to read & write & spell, vision dysfunction (blackness, inability to focus eyes), gradual hearing loss which improved months later. Severe pain in muscles, painful contractions every few minutes; fiery pain on all the surfaces of my skin.

      The crippling took over all the muscles of my body. Haven’t been able to walk properly for past 2 years; still walk like Frankenstein with walker or cane. Disorienting pain in feet when stepping on textured surfaces. Lost 7 levels of fine-motor skills as a music teacher within several months of this condition.
      Ongoing inability to walk unaided, tingling, burning sensations on the skin, worse after any exposure to cool temps. Ongoing muscle cramps; persistent weakness and exhaustion. Dizziness, vision disturbances; still have trouble speaking and co-ordination probs in all muscles.

      My body has had periods of improvement when my walking gait improves, strength improves, etc, but every time my town sprays for dandelions, or tree sprays, my body regresses again for a few weeks. These pesticides, herbicides and other toxins can also be tasted in the town water; even though I use reverse-osmosis water, the water I use for showering, washing, brushing teeth, washing dishes is tainted with these toxins for several weeks. 40 organizations within our little town all spray various areas, including lawns, parks, trees, boulevards, flower borders; rodenticides are regularly applied also, around and inside buildings. Our town also has a very high cancer rate, but the people seem to be stuck in the “green-lawn mentality”.
      We have had up to 5 death cards at the post office per week in a town of 1600 people.

      So, I’m thinking that the toxins in the tree pesticide spray made me more vulnerable at the time of my flu shot. I had also been having some cramping and tingling symptoms in my muscles at times since my previous flu shot in 2006, so I think my body was already compromised, and then the 2007 flu shot devastated it.

    • Anonymous
      October 10, 2009 at 6:26 pm

      Tousley was in very good shape, 15 year’s old, playing football and wrestling. He was exposed to mono on the football team and had a slight case of it. He also had a flu shot. Both of these occurred in november and he started noticing symptoms (weakness and tightness in his legs)in Jan. was finally diagnosed with cidp in march.

    • Anonymous
      October 11, 2009 at 12:45 am

      In my humble opinion.

      Many people lose track of what CIDP is and want to blame many things on CIDP that are not. I had a chat with a neuro early on. We talked about my symptoms. Like everyone else here, I had plenty of maladies, sleep apnea, tinnitus, back and neck surgeries, etc.etc. The neuro talked about diagnostic processes, including “clumpers and dividers” He said that he is a “clumper”, saying that more than likely most of the symptoms had a common cause, and if we found the “trigger” symptom, then diagnosis would be easy.

      And then he said he could be totally wrong.

      When I went to the University research Neuro, he cautioned against “clumping”. In his opinion, each symptom had its cause and therefore each symptom had its own solution. So, I use a CPAP for the Sleep Apnea, I take anti-inflammatories for the tendonitis, The tinnitus stinks, and so on.

      CIDP. The function of the disorder is a screwed up immune system that attacks and destroys the myelin sheath that surrounds the nerve axon. The greater the demyelination, the more severe the CIDP.

      What causes the aberrant T-cells to survive? There is supposed to be a process in the thyroid that kills off any T-cells that have the potential of “destroying self”. Before the bad T-cells mature, they are eliminated. In our case, they slip through and wait, and wait and wait.

      Then something “turns them on” and they go after the myelin. They do not recognize myelin as “self” and see so much of it in the body. It treats myelin like an Invader, and replicates and goes after the myelin full throttle.

      In My Humble Opinion, the ultimate cause will differ with each of us. What makes this aberrant T-cell go after myelin, and not go after the CNS and produce MS, or go after the insulin producing part of the pancreas and make diabetes, or go after the joints and make R. Arthritis, or whatever makes lupus, Graves disease, ALS, or the whole host of other Autoimmune diseases.

      Maybe it was a vaccination that spurred on the immune system, or a virus that structurally is similar to myelin, or the flu, or a cold. I really believe that we could not have done something different and avoided an autoimmune disease. I think that we are more susceptible to autoimmune disease genetically, but not to any specific autoimmune disorder.

      I will not assign myself any blame about how I got CIDP. If I only had not done this, or if I only had not gone there, or if I had only not smoked Pot. Or whatever. I have it and want to get better. I choose to focus on that.

      But, thinking about a cause is interesting.

    • Anonymous
      October 11, 2009 at 3:06 pm

      [QUOTE=Dick S]
      What causes the aberrant T-cells to survive? There is supposed to be a process in the thyroid that kills off any T-cells that have the potential of “destroying self”. Before the bad T-cells mature, they are eliminated. In our case, they slip through and wait, and wait and wait.Then something “turns them on” and they go after the myelin. [/QUOTE]

      [B][FONT=”Comic Sans MS”][SIZE=”2″][COLOR=”Sienna”]You’ve just said something of [U]enormous[/U] interest … “thyroid”. [/COLOR][/SIZE][/FONT][/B]

    • Anonymous
      October 11, 2009 at 10:42 pm

      1.- Neurologist use Rituxan different than hematologist, Dr Pestronk ( Use it
      frequently, and have written a lot of papers about CIDP and other peripheral neuropaties ) in his protocol he use at 375 mg per square meter of body area, which come to be about 700 mg to 1000 for most people , repeat it 1 week later and then 10 weeks later … then in 6 months to a year .

      2.- He has the best site in the Internet regarding these disorders, and offer
      excellent lab resources for antibodies.(Accept all insurances including Medicaid and Medicare)
      3.- I talk to an MD , from his office, I was told that they use Rituxan after the first set, every 10 weeks for 10 times.
      4.- Disclaimer: I am not associated or receive any benefits from Dr Pestrank or Washigton University or nobody (Just in case, as it sound I am advertising the place.
      The best paper , easy to understand I have read about how Rituxan works is from Dr Marinos Dalakas National institute of Health. Pioneer in IVIG use.
      Thanks to him, my wife is still alive, in those days, 30 years ago, she became quadriplegic, was denied IV gamma globulin by professor of Universaity of miami, claiming he did not know it, I gave to her ,(by Dalakas advise) and it was almost a miracle, next day she was walking.

      Unfortunatly now her diaphragm is paralized,after 30 years of struggle, with her disease ) and now she is on ventilator with a tracheostomy, and with 3 different levels known at very high titles MAG, Sulfatides, and GD1B.. and expecting the GALOP ANTIGEN ALSO HIGH, IT WAS GIVEN THE FIRST 3 DOSES OF RITUXAN , AFTER THAT titers are lower , except MAG. Waiting on
      IVG as last few months no responding, but hope it may after the Rituxan ,
      She does have elevated M PROTEIN , probably MAGUS, she refuse bone marrow , (very painful and unsusccesful previous one).
      5.- Rituxan is not chemotherapy , it is monoclonal antibody, even that vigilance for certain specific type of infection is required , it does not impair the rest of the immune system , it deplete the B cell population , which are the precursors of Plasma cell , the factories of M protein , also interfere with production of those bad antibodies against certain compounds of the Myelin .
      Have some inducer role on T cell ,
      According DR Norman Latov ( He study and discovery a lot of things in his lab in the 80’s, HE IS IN NEW YORK AREA,) it can be used in conjunction with Fludarabine.
      6.- Camphylobacter a bacteria in poorly cooked chicken , as cause of GBS . (MFS), with specific antibodies seen in serum
      7.- For chronic cases the detection of antibodies titers are very important
      as they correlate often with specific clinical presentation , and help to
      distinguish certain variants that may respond better to specific treatment(Cytoxan, Fludarabine, Rituxan, Ritux plus Fludara, IVIG, Steroids.) ..Be careful , steroids do not work with certain modalities and definitly could make them worse.
      I apologize for my English, no so good, as I speak it as a second language.

      It would be interesting , to organize our physical findings, symptoms , mode of presentation, time from first symptons , Lab, treatment, to do that it would be important to ask your neurologist certain questions , 9I can go over this later) but as example,: Motor more than sensory?, Babinski Positive,? My tendon reflexes,? Symmetric, distal> proximal., cranial nerves involvement, subtle neuro signs, gait, ataxia, upper motor neuron involved, dynamometry ?.
      Those are quick examples only , but there are known scales for evaluation that can be used that measure neuro status before and after . Everyone will benefit , but it may take a while to compile the information .
      If we get some receptive ears, may encourage us to pursue the idea, reapeating the request in other areas as needed.

    • Anonymous
      October 12, 2009 at 6:43 am

      It would be interesting , to organize our physical findings, symptoms , mode of presentation, time from first symptons , Lab, treatment, to do that it would be important to ask your neurologist certain questions , 9I can go over this later) but as example,: Motor more than sensory?, Babinski Positive,? My tendon reflexes,? Symmetric, distal> proximal., cranial nerves involvement, subtle neuro signs, gait, ataxia, upper motor neuron involved, dynamometry ?.
      Those are quick examples only , but there are known scales for evaluation that can be used that measure neuro status before and after . Everyone will benefit , but it may take a while to compile the information .
      If we get some receptive ears, may encourage us to pursue the idea, reapeating the request in other areas as needed.[/QUOTE]

      count me in – I have a lot of this information already but I love to go see my doctor with a list of questions… I’m sure it makes him feel needed. 😉 more important I’d love to see a patient-organized effort at collecting data – NOT making a diagnosis or making any other assumptions that we have medical knowledge or training (HUGE disclaimer) – just seeing what’s out there and organizing it. I’ll help… I love spreadsheets and databases 😀

    • Anonymous
      October 12, 2009 at 9:07 am

      when i first saw my neuromuscular neurologist, still awaiting a certain diagnosis, among other things, he asked me, “how do you think you got sick?” i loved the question because it was the first time my opinion about it all was considered. before that, i’m not sure if they even believed me– the doctors would do a nerve test and say, “hmm, yes, you do have a neuropathy…” ~ as if i didn’t know that, etc. i also appreciated the question because i think cause is more important than most seem to indicate.

      having a conversation about cause does not have to negate the basic idea that– of course the energy and focus should be primarily focused on healing– but we can still toss around the idea of cause to better understand what may have been one or more contributing environmental factors.

      my doctor, dr. burt, chief of immunotherapy at NW, believes in the basic autoimmune process, as Dick S explains so clearly (where the body becomes intolerant to self, etc.); dr. burt also believes that there exists an environmental factor(s). How valuable it would be to understand this component of the equation. as we are not doctors or scientists, i think it would be rather difficult to gather the necessary data and make any good medical/scientific sense of it. having said that, i do think there is great value in exploring environmental aspects that our doctors do not care at all about. oh sure, they tell us to not stress, etc…. but it is not even close to where they focus their thoughts– which shift immediately to ‘how to treat it.’

      what i have been trying to do ever since this post began is to ascertain what the main environmental points are that you have expressed in your posts. i made a list of all environmental aspects expressed by all of you from stress, shots, to surgery and exposures, etc. then i assigned numbers to these aspects. finally, i tried to ascribe these aspects, by number, to determine whether certain patterns emerge. when this thread was at 35 responses, i configured a table illustrating my results. yes, yes, i know there is nothing scientific about what i am doing… but seeing these results displayed without the extra chatter is kind of fascinating. certainly two aspects stand out: stress and shots. infections, both viral and bacterial, are also commonplace. it makes me wonder if, for example, stress or other immune lowering things (e.g. surgeries, pesticides, etc.) act as groundwork for the impending introduction to the body of some antigen, and its inability to do right by the body– perhaps a flu shot, a flu, shingles or whatever. taking myself as an example– i was under a lot of (1)stress, then got (2)shingles, then got symptoms or (3)CIDP… perhaps if 1 and 2 were not present, number 3 would never have happened– even though i was exposed to that which could cause molecular mimicry… who knows right? but as i face the possibility that my immune system could become ‘tolerant to self’ post my stem cell transplant, i am even more determined to understand “cause.” i’d like to step away from it in the future if i can…

      rather than delving into the science of it all, the variants, numbers, etc., i propose a better understanding of the events just preceding, say 1 year, the onset of your symptoms. what was remarkable in that year in your life prior to getting sick…? things i think are important to consider are as follows:

      -where you resided.
      -what shots you received
      -what illness or surgeries you had
      -your level of stress/anxiety
      -anything special bout your alcohol use or abuse

      what are your thoughts? i’m open to all ideas and help 🙂


      p.s. almost bald…

    • Anonymous
      October 12, 2009 at 10:36 am

      [I]The connection in my case has been verified by various studies … breast cancer and CIDP.

      What I wonder about is which came first? … the chicken or the egg?

      “Burning” was an issue from the time of the first surgery. Was the surgery the “last straw” and the CIDP had been there previously?

      I’m of a mind to say that the very early early beginnings of breast CA had kicked off my immune system and that, in turn, had started the CIDP problems.

      So … Did the CA kick off the CIDP? Or did the CIDP kick off the CA?

      There’ll never be an absolute answer, but there is most definitely a connection[/I]

    • Anonymous
      October 12, 2009 at 11:58 pm

      I think my CIDP was caused by prescription drugs. I had terrible side effects that the doctor ignored. The drugs basically shredded my immune system and caused Acute Pancreatitis that threw CIDP into full gear.
      I will always wonder IF I’d been diagnosed sooner what my life would be?

      What happened to the CIDP survey that wanted Forum folks input last year?? Heard anything about it?

    • Anonymous
      October 13, 2009 at 12:03 pm

      [FONT=”Book Antiqua”]Limecat, I’m not so sure about pancreatitis connection. I had an Acute Pancreatitis in 2003 … 8 days hospital, 4 of those completely out of it and on IV solutions and morphine. No apparent or logical reason for it.

      But that was 4 years before any sort of CA or CIDP symptoms … 4 years of extremely good health, including strenuous activities.

      I don’t think it does us any good to go way back in our medical histories trying to unearth something — anything — to explain the onset of CIDP.

      It happens.
      As the old saying goes: sh*t happens.
      And it does.
      And for no apparent or logical reason.

      If, however, your CIDP and the pancreatitis showed up at the same time … well, who knows?[/FONT]

    • Anonymous
      October 13, 2009 at 10:41 pm

      I KNOW mine was caused by the flu vaccine… I’d never had one before, and within 10 days, I began to get symptoms of GBS. On Monday, it started with numbness/tingling in my hand, and by that weekend, I was on a vent.

    • Anonymous
      October 16, 2009 at 2:03 am

      The Pancreatitis put me in ICU for a long time and was told I’d be a guest in the hospital for the next 12 months.One neuro I saw in 2005 said Pancreas controlled part of regulatory systems and he thought may had caused CIDP. His idea but not a bad one. Being so critically ill certainly caused severe relapse.
      The prescription drugs was very toxic and neuro said I had the worse drug induced toxicity he’d ever seen. My body had to deal with foreign toxins that lead to enormous physical damage,

      Still wondering about the CIDP survey that was posted by this foundation 2008. The conclusions drawn by the questionnaires for hopefully more reasons why CIDP happens. Maybe lead to better-less costly treatment/earlier diagnosis/help for future people.

    • Anonymous
      October 19, 2009 at 10:49 am

      For me, the doctors have always asked about what might have triggered the CIDP. As I had progressive symptoms for at least 2 years and thought my clumsiness and imbalance was due to getting older and heavier, I couldn’t think of anything. My brother has MS and when I described my symptoms, he said many were much like his, onoy WORSE! That got me to a doctor for the first time in over 2 years and led to the neurologist and the diagnosis.
      Looking back, I am not sure that it was not related to working in NYC after 9/11 and being exposed to that environment. I know oif another attorney who had his onset after 9/11 as well.
      I have always been very healthy (and still am). No flu shots, no surgeries or other medical problems. I agree with Dick S. that we have a predisposition to autoimmune disease and we just don’t know which one will occur or what the trigger will be. So far, my brother in Texas has avoided the autoimmune disease, but maybe that’s because he got out of NY years before my other brother and I did.
      I think stress is a bigger factor on the CIDP after you have it than before and have certainly experienced that. Here’s hoping that research to prevent and to cure will be succesful.

    • Anonymous
      October 19, 2009 at 10:18 pm


      Just a theory of course, but my disease started to present itself in the months following my first flu vaccine… Trigger?

      I haven’t posted in years – as I had an almost full “recovery” with IVIG treatments every 4 to 5 weeks. I now seem to be having some sort of relapse and am back, as I have done in the past, when I am freaked out and needing to connect to others who understand. I am hopeful that this is just a glitch and that I will not be one for whom IVIG once worked, but stops.
      I will try to remain optimistic. (I also really would rather not have to dabble with any immunosuppressants….)

      My thoughts are with you.


    • October 24, 2009 at 8:00 pm

      I need to add about the infected gums I had prior to my health meltdown. I always took care to get my gums cleaned every four months for the past 30 years to prevent peridontitis or gingivitis.
      My mouth was in perfect shape before a new dentist started cleaning and doing it all wrong with just a cavitron.
      In about a year I had to find good hygienist who brought my gums back to health with deep scaling root planing and a powdered antibiotic Arestin.
      It was after that when I was diagnosed with Diabetes and my feet were sensitive and painful (I think it was the CIDP).
      I know that infected gums can cause a whole cascade of health problems.
      When Diabetes invades the body it’s hard to keep the gums healthy.
      The IVIG Living magazine described a theory about GBS and said it might be a microbe that infects the body. The microbe may ressembe a nerve and the immune system destroys the nerves. If the theory could be proved maybe a microbe from my gums infected my body and caused CIDP.
      Which came first the Diabetes and CIDP or the underlying gum disease. I have a family history of Diabetes.
      Now my gums are pink and healthy and I am getting my teeth cleaned every 3months.

    • October 24, 2009 at 8:06 pm

      I need to add about the infected gums I had prior to my health meltdown. I always took care to get my gums cleaned every four months for the past 30 years to prevent peridontitis or gingivitis.
      My mouth was in perfect shape before a new dentist started cleaning and doing it all wrong with just a cavitron.
      In about a year I had to find good hygienist who brought my gums back to health with deep scaling root planing and a powdered antibiotic Arestin.
      It was after that when I was diagnosed with Diabetes and my feet were sensitive and painful (I think it was the CIDP).
      I know that infected gums can cause a whole cascade of health problems.
      When Diabetes invades the body it’s hard to keep the gums healthy.
      The IVIG Living magazine described a theory about GBS and said it might be a microbe that infects the body. The microbe may ressembe a nerve and the immune system destroys the nerves. If the theory could be proved maybe a microbe from my gums infected my body and caused CIDP.
      Which came first the Diabetes and CIDP or the underlying gum disease. I have a family history of Diabetes.
      Now my gums are pink and healthy and I am getting my teeth cleaned every 3months.

    • Anonymous
      October 27, 2009 at 2:06 pm

      I am internally convinced (not sure anyone else believes me) that my CIDP developed after my L4-L5 disc injury. I had two back surgeries to repair it, and somewhere in between the surgeries (which were about a year apart) I developed burning, stabbing, and itching in my feet and lower legs. It was always attributed to my back injury, and only when my hands began to have symptoms (maybe 10 years later) did I get a Neurologist who listened to me and did a sural nerve biopsy… the diagnosis – CIDP. I just had a thorough re-evaluation that confirmed the diagnosis… but my symptoms are not typical. I suffer great pain, numbness and muscle cramping… along with fatigue and flu like symptoms. but my reflexes are good- I am strong. And most of the testing is normal… very frustrating to feel so bad and to have so little objective symptoms. But should be greatful to be strong… sigh!

    • Anonymous
      October 27, 2009 at 3:32 pm

      [QUOTE=Granada26]I am internally convinced (not sure anyone else believes me) that my CIDP developed after my L4-L5 disc injury. I had two back surgeries to repair it, and somewhere in between the surgeries (which were about a year apart) I developed burning, stabbing, and itching in my feet and lower legs. [/QUOTE]

      [FONT=”Book Antiqua”][SIZE=”2″][COLOR=”Sienna”]And why not believe you? If your immune system went into hyperdrive, CIDP seems one of many possibilities.

      What I find interesting, and what is such a great boon to me, is that there is a forum to which we can all contribute. We are enlightening each other far more than our general docs can do … and far more than some of them, even the so-called “experts” believe is a possibility. [/COLOR][/SIZE][/FONT]

    • Anonymous
      November 8, 2009 at 9:00 pm

      Meth labs. I had to work a few prior to having CIDP. Can’t think of anything else.

    • Anonymous
      June 9, 2010 at 8:34 pm

      Hi Alice,
      I’m also interested in what causes CIDP.

      In my case, it became very evident about a week after having a flu shot (conventional, not H1N1). My doctor initially thought I had GBS, mainly due to the connection with the flu shot. However, when the problem came back a few months later, he realized it was actually CIDP. Tests confirmed this.

      Now that I look back, I think the symptoms were gradually coming on for as long as a few years prior to the point at which they became evident. I had actually complained to my doctor about fatigue and lack of energy, but he couldn’t find anything, and I attributed it to creeping old age. But I also had other symptoms, which I didn’t recognize at the time: my balance was slowly deteriorating, and I was more ‘clumsy.’ In particular, I tripped a lot, which I now know is a typical symptom due to weak leg muscles that cause something called foot drop.

      So, did the flu shot play a role? I dunno. I think maybe I was teetering on the edge of the CIDP cliff, and the flu shot pushed me over. But, to be honest, I have no way of knowing.

      How many people have a correlation to a flu shot, or some other kind of viral infection?

    • Anonymous
      June 9, 2010 at 11:44 pm

      My 16 year old daughter was diagnosed with GBS. She had the third dose of the guardasil vaccine . A few weeks later she got the H1N1 and the flu shot at the same time. A short time later she became very ill with a severe case of strep and was put on antibiotics within 24 hours of symptoms. Although the sore throat, fever, etc, went away, she became sick about a week later with GBS symptoms. It started with numbness in her toe and foot. She later had neck and back pain, severe, crushing leg pain , and later difficulty in walking and numbess of the tongue and her face drooped. The doctors did report the connection of the H1N1 vaccine with the GBS.

    • Anonymous
      June 10, 2010 at 9:19 am

      I am also a victim of the H1N1 vaccine. I developed symptoms 4 days after receiving the vaccine and the doctors also correlated my symptoms to the vaccine, mild GBS.

    • Anonymous
      June 11, 2010 at 10:43 am

      I’m surprised how many people said “stress” – I think my husdand’s CIPD was from a couple possible reasons – stress/trauma, or local steriod injections for lower back injury, or a combination. I think it started prior to the steroid injections, because he got the injections for lower back pain thinking it was from an old injury…when in fact I think the lower back pain was the beginning of his CIDP. Stress/trauma – my sister and baby brother died within 2 weeks of each other, my husband lost his job right after the 2nd funeral. By the time he found a new job in Montana (we were in Oregon – he had to move by himself because I coulnd’t join him for 6 months) he was really having problems walking. By the time I arrived, his lower legs had atrophied.

    • June 11, 2010 at 2:30 pm

      Most doctors have never even seen CIDP in their lifetime and I don’t think even the experts know the cause. There could a combination of triggers in susceptible individuals and we’re all like snowflakes anyway.
      It seem the important thing is the right doctor, the right diagnosis and the right treatment. Delaying treatment or getting the wrong treatment can can residual problems later.
      My Prayers and Best Wishes

    • Anonymous
      June 12, 2010 at 9:44 pm

      i think my husband got cidp from flood water.

    • Anonymous
      June 13, 2010 at 6:50 pm

      My neuro, whom I love, when asked what caused my GBS just grinned at me and said, “Bad luck!” He wasn’t being rude or uncaring – and I believe him – so in my case, bad luck it is.

      Sue – I had a spinal fusion in Aug. 1970, July 1972 and then again in May 2009 and Aug 2009 – all to correct and repair scoliosis. The surgeries have saved my life, and no made me pain free. That is a Praise God!

      Then GBS arrived on my doorstep December 25, 2009 – Merry Christmas. Too many surgeries in 2009? (It was 17 hours total), or going back to work too soon, or just bad luck? I’m staying with the luck diagnosis, it makes me grin.

    • Anonymous
      June 13, 2010 at 9:07 pm

      I am 100% sure mine was from a flu shot as are my doctors . It was the first time I had chosen to get one and within 2-3 weeks I was completely paralyzed all the way into my face . In fact …. I work for a group of doctors and they will not even take them …especially the H1N1 . I wont allow my son to have them either . I think they harm more than help and even if they were to get something they are able to treat them with good outcomes .
      The CDC are the ones that push them so much and use “scare tactics” to get people to get them. People need to start reading about them and not getting them just for the sake of getting them . I do believe that enviromental issues are to highly blame as well !

      Kimberly 🙂

    • Anonymous
      June 14, 2010 at 12:52 am

      I was dx with GBS Oct 2006. I had been doing my regular job as a busy custermer service. I was walkng, bending, etc. I also began as a Balloot Inspector for my city.
      After I recieved my Dtap shot… that when I went down hill. From Sept 8th through Oct 3, 2006 I went from a happy mobile person to one that had to use a cane and hold onto another person for suport to get arround.
      My primary dr was great to try to throw out every test she knew. Then she sent me to a Nureo.. who did the EMG and right away told me I had GBS, and got meinto the hospital that day. On the bad side I was algeric to the IvIG.
      I learned about the Compensation Program from the Fed govt. I have a lawyer and I may have a case. All takes time.
      I am unable to work. I have appl;ied for SSD, but as we all know it takes forever.
      I long for the day when I was able to do what ever I wanted. Now it is still hard to figure out how my body will react.
      Besides GBS, I have fibromyalgia, major depression, and recently hd my thyroid removed (cancer). Now I jsut wonder what will come next in the auto-inmunion problems.

    • June 14, 2010 at 10:31 am

      My first symptoms appeared in 1987 and slowly developed. Diagnosed as Carpal Tunnel. Kept progressing until weakness discovered in 93. Diagnosed in 94 and treated ever since.

      I have thought, and thought and thought and keep sliding away from the trap of “after this therefore because of this”. I do not “know” what caused the CIDP and neither do any of my doctors. I guess it was just the luck of the draw. As to what I would say if I was forced to guess would be campylobacter jejuni with some long forgotten stomach “upset”. But that is purely a wild guess.

    • Anonymous
      June 14, 2010 at 9:50 pm

      I want to correct my years …… I was dx in Oct 2008.
      I still need to learn that on good days I have to slow down, so that the following days wont put in total pain.
      I know that I am learning from all of you on this board. Thank you.

    • Anonymous
      June 16, 2010 at 9:18 pm

      I have a friend who has flown for 30+ years, international as well as domestic flights. She was diagnosed a couple of years ago with CIDP, and her doctors told her that there was an increased number of patients with CIDP among airline workers. So who knows? Bad air? Exposure to multiple viruses a/or bacteria? Stress? And then there was that case a year or two ago about the workers in a slaughterhouse that used a high-pressure air hose to blow pig brains out of the skull, and almost all of them came down with CIDP. Who knows?

    • Anonymous
      August 24, 2010 at 1:34 pm

      I believe mine was onset ny severe head trauma. I was in great condition, worked out, ate right, some stress as a business owner, and the normal rigors of raising a family.
      I noticed numbness in my left leg and pins and needles when I walked. First I thought it was my shoes, then it carried on. About three weeks later noticed my big toe dropped. Over the next 24 months the disease was aggressive and attacked me to the point I was unable to walk. Dis pred, and then IVIG, that allowed me to start to walk again.

      So, stress, head injury, exposure to chemicals, work, family…………….just bad luck

    • Anonymous
      August 24, 2010 at 9:03 pm

      some say it the stress of being pregnant. i was diagnosed with cidp at 30 weeks pregnant. one dr said that my immune system was protecting the baby so it attacked my body.
      i also had double ear infections and a sinus infection when i was pregnant and i couldn’t take antibiotics.

      who knows….i mean i want to blame something but it would take these braces off my legs.

      i am curious the average age of everyone.

    • August 24, 2010 at 9:31 pm

      mine came on very gradual, started as leg cramps at night–that i blamed on running or too much exercise at the gym. then i started with tingling then numbness and eventually weakness. would mention the tingling etc at my check ups but it wasnt until the numbness and weakness began that i was referred to neuro. NO idea why????–its auto-immune–my body is making antibodies to potassium…have always been healthy, had 3 normal pregnancies,always exercised, not exposed to anything toxic that im aware of..i guess like a lot of us with auto immune issues we may never find out what exactly caused the body to turn on itself. Lori

    • Anonymous
      August 25, 2010 at 12:31 am

      Honestly I think mine was caused by the fact that my life was finally coming together.

      Everything in my lifewas starting to turn around when all this happened. In the process of buying a house, have a partner of 3 years. Work was starting to relax so I could do other things, like my photography. We had just started a family ( adopted our precious puppy)

      So life was going to easy, and something had to ruin it

    • Anonymous
      October 2, 2010 at 5:21 pm

      This was almost to easy of a question for me. I am (was) a very healthy person. Never got sick. Did not even have a PCP for over 10 years. Then I went to Vegas. Nothing there caused it. But on the drive back I got a tickle in my throat. That turned into a cough and sneezing. Then a full blown head cold. 5 days later I was fine. 14 days later extreme pain in lower and upper back and legs, facial paralysis. The start of CIDP (GBS was the first dx).

      So it all goes back to the head cold. One of the symptoms during my cold was the loss of taste and the sensation of hold and cold in my mouth and throat. That was identical to when I first got dx with CIDP. I don’t think it was a coincidence. They were related somehow.

    • Anonymous
      October 2, 2010 at 10:01 pm

      My husband developed it after a bad case of diarrea but he also tested positive for rocky mountain spotted fever even though he showed no symptoms of it. I’m thinking he might have gotten the tick bite and his immune system just went crazy trying to fight it off.:(

    • Anonymous
      October 3, 2010 at 11:59 am

      I can’t say that stress alone caused my CIDP. Looking back on things now, I had intermittent mild symptoms (pain, tingling, numbness) that came and went for a number of years in my legs and feet. I chalked it up to bulging degenerative disks in my lumbar spine. The symptoms definitely worsened under times of great stress and around the holidays, which also are somewhat stressful. In addition, my auto-immune system slowly began to act up over the years. I developed seasonal allergies in my 30s, and those slowly worsened. I was diagnosed with psoriasis. I began to suffer with viral infections, especially sinusitis. All of these things were exacerbated by stress (what isn’t?), and I have to admit I was under tremendous pressure when my CIDP really came to the forefront for good. I believe stress is a trigger for CIDP and many other nasty things that befall us all, but as for the primary cause of what ails us, I think the mind/body is much too complicated at this point for us to be definitive.

    • Anonymous
      October 6, 2010 at 10:51 am

      I went to St. Lucia (honeymoon) remember getting “food poisioning” symptoms from beef while on trip in 2003.

      On the flight back to the states, tongue, lips, fingertips went numb…
      lips and tongue improved, but slowly fingers/toes got a little worse each year, and I’d have “flare ups” of numbness if sick with something else.

      Slowly got worse from then on.
      Took a few years/tests to pinpoint CIDP, mostly by ruling out GBS/MS/ALS, etc….

    • Anonymous
      October 6, 2010 at 2:53 pm

      suffered from lots of stress due to family drama and caring for terminally ill husband. started feeling fatigued and severe depression. was at hairdresser and one customer coughed constantly without covering her mouth. 2 days later, i had bronchitis. I coughed so violently that i thought i broke a rib. 10 days after onset of bronchitis, i felt tingling in fingers, then entire body felt numb with tingling. legs went out from underneath me and I fell flat out on the floor. was taken to hospital and after tests and spinal tap, diagnosed with GBS. within 24 hours, lapsed into 6 week coma. developed hemolytic anemia and went through 4 courses of chemo. when i finally woke up, was trached and could move eyelids only. drs said they suspected bronchitis and low immune system due to stress as cause.

    • Anonymous
      October 6, 2010 at 10:38 pm

      I was 52 years and in good health. My doctor recommended a pneumonia vaccination and right after that I contracted bronchitis. 2 weeks later I was in the ICU on a ventilator. I was in the hospital for 8 months and I never did recover completely. I have encountered other GBSer’s that ate undercooked chicken.

    • Anonymous
      October 9, 2010 at 10:32 pm

      Lets see. In the past year, I think it was a combo of stress, surgery, and being sick.

      -full time student at age 43 while doing a full time clinic rotation in a hospital
      -Diverticulitis caused me to be in hospital for a week
      -Kidney surgery to remove a non cancerous tumor.

      One of them, all of the above? Who knows. Got diagnosed a month ago, have my first IVIG treatment this coming week. Not looking forward to it.


    • Anonymous
      October 19, 2010 at 1:22 am

      Stress – severe tooth infection – flu shot – viral infection (all around the same time) too much for my little self to handle!

    • Anonymous
      October 19, 2010 at 11:53 pm

      CIDP symptoms were mild until the last 4 years. I began to feel tired and my toes went numb about 15 years ago. Thinking back, I had a bad reaction to the Swine Flu immunization given in mass at a local mall back in the 70s. I also had a weird rash similar to Lime Disease on one of my legs in the early 80s. Otherwise, I was mostly healthy except for nagging sinus problems due to allergies.

    • Anonymous
      October 26, 2010 at 4:04 pm

      I had the ruptured disc for months- tried every non surgical treatment I could find, but when the right foot dropped to the point I could not walk, I had surgery— twice. The back is much better, but the tingling and numbness continued to progress up my legs– then to my hands.

      Over the last 20 years I have wondered if it was the back injury??
      I also had the hepatitis series of inoculations around that time.
      And a severe bout of dysentery that required a large dose of antibiotics
      Stress for sure, but who does not have stress?

    • Anonymous
      October 26, 2010 at 8:31 pm

      Certainly stress- being under stress lowered my immune system but there were multiple possibilites of what caused my CIDP: I had surgery a few years prior and got a bad staff infection; I had a cardiac cath; I hit my head pretty hard; I went through houses in Florida that had chinese drywall; I took care of my brother-in-law who was a U.S. Veteran, had returned from the Gulf War-was ill-and he died. I have one Uncle who had GBS; my father has Rheumatoid Arthritis; 3 cousins with MS. So ?????? Probably hard one to figure out.

    • November 21, 2016 at 12:39 pm

      I have had CIDP for 12 years. In the past 2 years I believe mine has accelerated due to stress. Stress from worrying about the future. I feel like I am on an emotional roller coaster that is causing extreme pressure on my marriage. She has threatened to leave several times because of outbursts and the emotional eruptions. Not to sound like Yogi, but the worse it gets, the worse it gets. If there is anyone out there who can put in writing how angry and emotional you get and how depressed you can become, I would be grateful just to know I’m not the only one.

      My fear is that she is 55, I am 56. She is considering what the future will hold. She has said that “she has her life to live.” It makes me so sad. I don’t know what I will do without her.

      Thank you and God bless.

    • January 15, 2017 at 12:39 pm

      I first noticed my CIDP symptoms a year ago. We had mold in our apartment, leading to three walls and all of our flooring needing to be replaced. December 2015, they opened the walls and exposed my roommate and I to the horrors within. They left it open for weeks and just let the mold spores and whatever circulate. Fortunately, my roommate has none of these symptoms. It took 8 months for me to get a diagnosis, another 2 months for someone to agree to my IVIg treatment, and I actually saw some improvement. I did a course of IVIG, once a week for 8 weeks. However, now it’s bee a month since my last treatment and my symptoms are coming back worse than before. I have another 3 weeks before my next neurologist appointment, which sucks, hopefully I will still be able to walk by then. As for stress, I’m also a 4th year doctoral student. This has slowed me down, but hasn’t stopped me yet.

    • January 15, 2017 at 3:33 pm

      Try taking some Alpha Lipoic Acid while waiting for another round of IVIg/SCIg or PE. Search it by keywords in the forums to learn more. I get mine here:

    • January 16, 2017 at 10:55 am

      For me it was either a yellow fever vaccination or getting a traveler’s bug in Brazil (Giardia or something similar).

    • January 24, 2017 at 12:34 pm

      Statin drug.