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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#1

Dose anyone have a definitive idea of what caused your CIDP? How long have you had CIDP? When was your first symptom?

I'm thinking my first symptom was left foot tingling in 2002 that eventually became a debilitating foot drop. Serious symptom hit me in 2010-2011. Within a very short period of time of three months my lower body became extremely weak, many muscles failed and my breathing was seriously effected.

Often with Guillain-Barre Syndrome, a cause can be determined, but the cause of CIDP remains a mystery. I feel that there may be a common cause or is it just a roll of the dice?.

I look back over the years when I was evaluated by many, many neurologist, and with 20/20 hindsight, the symptoms of CIDP were as plain as the nose on my face.

Is CIDP caused by a genetic mutation, a virus, a bacteria, Teflon cookware, or some other common experience?


#2

Who knows?

I was a mental health nurse for nearly 30 years and I'm pretty sure the constant stress the tricky situations I had to deal with has played a part.Quite a few of my former colleagues have developed other neurological illnesses(several have died very young too).

I asked my neurologist if it could be anything to do with the lysergic acid I took in the early 70s but he said no.

Any old acid heads out there can rest happy.


#3

The root cause of CIDP in my case was Statin Drugs. I was on 80 mg. a day of Lovastatin for 2 years when symptoms appeared. I was immediately removed from the drug and started IVIG treatment, which has been ongoing for the last year and half. Because the cause was identified and removed, my recovery has been very good. Although lost muscle won't return, I have been getting stronger, as gone from walking with a cane to being able to run if necessary, my balance has recovered 90% and I'm able to do work I was unable to do a year ago. Also, I have had no relapses as the cause was identified. So if you are on cholesterol lowering drugs, get off of them and find healthy ways of controlling Lipids as I have done.


#4

My most noticeable symptoms occurred within a week or so of getting a flu shot, and my neurologist is pretty sure that was the cause. It seems to be pretty well established that getting the flu, or getting a vaccination, can cause CIDP.

But I am not so sure about my case. When I look back, I realize that I had what might have been CIDP symptoms for some years before it became real obvious. These included numbness/tingling in my feet, foot drop (lots of tripping and stumbling), general clumsiness, and fatigue. It was only after the flu shot that I got so weak that I could barely walk (and at times could not even stand up).

So, I wonder if I did not have some sort of low-level case of CIDP, and the flu shot pushed me over the edge into a full-fledged case. No way to know, though.

Bill


#5

Of course I can not say this with a 100% certainty, but in my case I suspect bad
dental work from the 80’s.
Have/had some mercury and “mystery metal” in my molars.
Also, an improvised diet (I traveled a lot) and regular fatigue must have contributed.
Have been under supervision at John’s Hopkins in Baltimore for 2 years now with alternating
succes.
My neuro specializes in neuro/muscular problems, teaches the stuff internationally and is also baffled by the cause/causes.

Have had light symptoms starting 20 years ago (unable to run, uncontrolable sweats, tired very quickly) to severe symptoms now (especially after surgery in April 2012).
Used to be in fantastic shape, which helps a little.
Muscle loss in feet, legs, right hand (skeleton hand), numb right side face, loss of power in legs, arms and left shoulder, foot drop did away with all that.
IVIG normally puts me on top again, but just started Sub-q applications myself and beside being bothersome and labor intensive, they are not having the wanted result.

Just like you I could have caught this a lot sooner but since the symptoms were light initially and disappeared after a while I just powered on through life.
Am a very strong advocate of early diagnosis now.

Stay strong!


#6

I think mine might be cause by Gastroparesis since my symptoms are made worse by food. I can go a week max without eating and my symptoms fade quickly. No one seems certain though.


#7

Mine was caused by a flu shot. I was healthy with no health issues whatsoever until the flu shot.


#8

I would have to say flu shot and my dr agrees
Never had one till the emergency response team I belong to hosted a free clinic and had us all receive one. Started having troubles within a month. Now it has progressed to a stage I’m home on disability. Going crazy!! Can’t drive due to arm weakness and or double vision. Never know when I wake up if I’m using a cane or wheel chair. You all know i,ll shut up now


#9

I have wrestled with this question and have no answers BUT I read a book by Sarah Ballentyne about the Paleo Diet approach to autoimmune disease and found it to be very enlightening. I have gone on a strict Paleo diet - I've been on it 3 months - I can't say it's helping but I'm not worse either and I think 3 months is too soon to tell.


#10

I was diagnosed in 2014 I presented symptoms I the end of 2011 I was building the Mendota federal prison as the general superintendent . I was exposed to chemicals, fungus that was being burned off on vegetation. I had my esophagus fried by airborne irritants from grinding welding chemical spraying metal etch, etc . I was positive for extremely high levels of lead and manganese . And was being treated for aspergilus niger infection . While there i was sent for one week to a project that was in the process of lead abatement without my knowledge. So to me the exposure was the trigger for my CIDP.


#11

I was hit by GBS two weeks after a tetanus shot, which progressed quickly to CIDP. Was in a wheelchair for two years, and now starting to use a walker more and more. For those who believe a vaccination was the cause be sure to apply to the Government for the vaccine compensation fund. You need to hire an attorney (attorney fees paid by government if you win or lose). Takes 2 - 3 years to get reimbursement. Google it and you will find attorneys who specialize in this.


#12

Sjogren's syndrome is known cause of this disease


#13

My left side went completely numb after a bad car accident 1year ago. My primary care dr ran MRI’s, CT’s, but couldn’t figure out why I was having weakness and progressive muscle pain, spasms and tremors. My Neuro completed a full EMG and diagnosed the CIDP along with other spinal and neurological issues. While I agree with diagnosis, I really feel that I may have contracted the CIDP after a severe respiratory virus that took several weeks to recuperate from. I have never felt heathy since and that was 3 years ago. I was diagnosed with RSD over 7 years ago on my right leg due to multiple trauma so it has been easy to think that RSD had spread or My frustration is my dr. Is dragging their feet on IVIG therapy. He just always wants to adjust my current meds. I’m just ready to feel better.


#14

Mine started on September 2008 with a tetanus vaccination that had whooping cough & difteria mixed. I knew from the first day that something was wrong, I had high fever and within a week my legs started getting weak. I usually walked about five miles on a daily basis for a very long time, and after this vaccination I could not walk even half a mile. Shortly I started getting weaker, the big toe on my right foot started getting numb and my right thumb and index. After I reported that to my doctor asked my get to the Emergency and then I was hospitalized, they did a spinal tap and started me in the IVIG. I was four and a half months between hospitals rehab. I got completely paralyzed fro chest down. Now about five and a half years latter, I'm walking with a cane trying to get my balance, and weekly physical therapy for five years, I have a very slow progress while I'm on IVIG every two months. My other problem is my hands tremble. Anyone else has that problem?

Maria


#15

My hands tremble. So far this has not been a problem. I was told by a neurologist it was essential tremor... and at the same time I was trying to tell him about my foot drop, fassics and weakness, dystaxia, yet I think he only saw what he wanted to see. He kept telling me it was diabetic neropathy, essential tremor, no to worry... I was told this for six years!



MSakkis said:

Mine started on September 2008 with a tetanus vaccination that had whooping cough & difteria mixed. I knew from the first day that something was wrong, I had high fever and within a week my legs started getting weak. I usually walked about five miles on a daily basis for a very long time, and after this vaccination I could not walk even half a mile. Shortly I started getting weaker, the big toe on my right foot started getting numb and my right thumb and index. After I reported that to my doctor asked my get to the Emergency and then I was hospitalized, they did a spinal tap and started me in the IVIG. I was four and a half months between hospitals rehab. I got completely paralyzed fro chest down. Now about five and a half years latter, I'm walking with a cane trying to get my balance, and weekly physical therapy for five years, I have a very slow progress while I'm on IVIG every two months. My other problem is my hands tremble. Anyone else has that problem?

Maria


#16

My most likely etiology relates to an episode of gastroenteritis in 1988 followed soon after by Irritable Bowel Syndrome and Irritable Bowel Disease (IBS/IBD) that went into apparent remission about 1994. This most likely resulted in a quite mild peripheral neuropathy that developed sometime in the next 10 to 15 years (not then suspected or diagnosed officially as the signs were mild and attributed to another problem).

In early 2012 a reasonably minor knee arthroscopic procedure resulted by some unknown pathogenesis, in rapid development of signs and symptoms which, due to the rapid development, would probably have been diagnosed initially as GBS but as diagnosis was not for 4 months by then the tag was CIDP. Recent nerve conduction studies have further supported the possible tag as the acute sensory motor axonal neuropathy (ASMAN) variety of CIDP.
I am one of the small percentage of CIDP people who can form a reasonable etiology pathway. Most can not.


There is no way to actually prove this etiology however the connections are well supported in medical literature.

Some References.

Franssen, H., & Straver, D. C. (2014). Pathophysiology of immunemediated demyelinating neuropathies—Part II: Neurology. Muscle & nerve, 49(1), 4-20. DOI: 10.1002/mus.24068

http://onlinelibrary.wiley.com/doi/10.1002/mus.24068/full

Nobile-Orazio, E., Gallia, F., & Judica, E. (2014). Chronic Inflammatory Demyelinating Polyradiculoneuropathy and Related Disorders. In Neuromuscular Disorders in Clinical Practice (pp. 605-632). Springer New York.

http://link.springer.com/chapter/10.1007/978-1-4614-6567-6_29

Deepak, P., Stobaugh, D. J., Sherid, M., Sifuentes, H., & Ehrenpreis, E. D. (2013). Neurological events with tumour necrosis factor alpha inhibitors reported to the Food and Drug Administration Adverse Event Reporting System. Alimentary pharmacology & therapeutics, 38(4), 388-396. DOI: 10.1111/apt.12385

http://www.researchgate.net/publication/242332165_Neurological_even...

Grantz, M. (2010, September). Unusual peripheral neuropathies. Part II: intrinsic reactive causes. In Seminars in neurology (Vol. 30, No. 4, p. 396). DOI: 10.1055/s-0030-1267283

http://xa.yimg.com/kq/groups/27464029/1519564639/name/incomumparte2...

Morís, G. (2014). Inflammatory bowel disease: An increased risk factor for neurologic complications. World J Gastroenterol, 20(5), 1228-1237. doi: 10.3748/wjg.v20.i5.1228.

http://www.wjgnet.com/1007-9327/full/v20/i5/1228.htm


#17

I was given 4 options by 4 Internationally known Neuro specialists who write, lecture and practice as neurologists, on CIDP causes.

Stress

High temperature with flu type symptoms

Diabetes

Alcoholism.

I can identify with the first 2 and do and have drunk alcohol.

Also my mother was a latent diabetic in her mid seventies and suffered loss of sensation in her feet,saying it felt like she was walking on pieces of wood.



Personally I think a long term stressful life and finally the high temperature brought it to a head for me in 1994/5 with a CIDP diagnosis.

As a child I lived in a disruptive environment, my marriage ended after physical and mental cruelty, I raised 3 children alone, changed countries where I started my own business but suffered bankruptcy in 1992 and lost everything, returned to U.K with $5 in my pocket, got a stressful job, with 12/14 hour days, then I had 2 redundancies in 1 year…and bingo…my son gets cancer, so years of stress until he got the all clear.

I am very lucky and content with myself, despite the same physical problems we all have.

My family are healthy, and there if I need them.



However, I did not fit the symptoms of CIDP totally, 5 yrs ago, and now am Multi Focal Sensory Neuropathy. It’s still progressive but slower I think. The latest “offering” is a drug called MMF…I think I will stay with IVIG every 4 weeks…but must decide by July.
Hope you all feel better soon.
Regards

Happy


#18

I’ve had foot problems going back to 1996, although I’m not sure to this day if they’re related to my CIDP. I started noticing numbness in my feet and hands around 2006, but it was minor and I didn’t worry about it too much.

In early 2007 I was prescribed statins (Lipitor) for cholesterol. Within a month or two I noticed a significant ache and weakness in my right forearm. I stopped taking it a few months later. In July 2007 I developed some kind of bowel irritation that lasted for 18 months. It included a lot of gassy pain, irregular bowel movements, a constant feeling of being bloated, etc. I had a number of tests, including a colonoscopy, and nothing specific was found. It went away on its own by the end of 2008 and hasn’t come back. I have no idea if that’s related to any of this.

The leg and hand/arm numbness and weakness started getting much worse late in 2008, a year and a bit after I stopped taking the statins and around when the bowel thing was winding down. Then in December 2008 I got a flu shot. I can’t say for sure that the numbness/weakness started getting worse as a result of the flu shot, but it was around the same time.

In 2010 I went to a neurologist. He ran some tests (EMG, etc.) and saw that something was going on, but couldn’t pinpoint it. He referred me to a neuro-muscular specialist who ran more tests including a muscle and nerve biopsy. Result: inconclusive.

From 2010-2012 it was up and down. Some days my legs would really hurt, and then I’d go days and days with no pain. But there was always numbness. Hands were the same, mostly on the right side, but it was easy to dismiss that as “mouse wrist” as I work on a computer all day.

By late 2012 things had changed. There was a significant “drop foot” on the right side, and the circumference of my right calf was half an inch larger than the left one. Also, I was having a lot of trouble with balance, especially on stairs, and overall weakness and low energy.

Back to the neurologists. Over the next few months I had more EMGs, a couple of MRIs, some blood tests, etc. This time they noticed my C-reactive protein (an inflammation marker) was through the roof, and that I had a very significant loss of muscle strength in my right shoulder as well as the drop foot. The neuro-musclar specialist declared CIDP in March 2013 and I started IVIG and Solumedrol (every two weeks) in May.

The treatments have been quite effective. While I still have some numbness, a lot of strength has come back. The positive effects of the treatments can last anywhere from a few days to the full two weeks.

So as you can see, it’s really hard for me to pinpoint any specific cause. Statins are in there, as is a flu shot, and gastro-intestinal issues, but it doesn’t line up perfectly.


#19



Michael C Stark said:

My most likely etiology relates to an episode of gastroenteritis in 1988 followed soon after by Irritable Bowel Syndrome and Irritable Bowel Disease (IBS/IBD) that went into apparent remission about 1994. This most likely resulted in a quite mild peripheral neuropathy that developed sometime in the next 10 to 15 years (not then suspected or diagnosed officially as the signs were mild and attributed to another problem).

In early 2012 a reasonably minor knee arthroscopic procedure resulted by some unknown pathogenesis, in rapid development of signs and symptoms which, due to the rapid development, would probably have been diagnosed initially as GBS but as diagnosis was not for 4 months by then the tag was CIDP. Recent nerve conduction studies have further supported the possible tag as the acute sensory motor axonal neuropathy (ASMAN) variety of CIDP.
I am one of the small percentage of CIDP people who can form a reasonable etiology pathway. Most can not.


There is no way to actually prove this etiology however the connections are well supported in medical literature.

Some References.

Franssen, H., & Straver, D. C. (2014). Pathophysiology of immunemediated demyelinating neuropathies—Part II: Neurology. Muscle & nerve, 49(1), 4-20. DOI: 10.1002/mus.24068

http://onlinelibrary.wiley.com/doi/10.1002/mus.24068/full

Nobile-Orazio, E., Gallia, F., & Judica, E. (2014). Chronic Inflammatory Demyelinating Polyradiculoneuropathy and Related Disorders. In Neuromuscular Disorders in Clinical Practice (pp. 605-632). Springer New York.

http://link.springer.com/chapter/10.1007/978-1-4614-6567-6_29

Deepak, P., Stobaugh, D. J., Sherid, M., Sifuentes, H., & Ehrenpreis, E. D. (2013). Neurological events with tumour necrosis factor alpha inhibitors reported to the Food and Drug Administration Adverse Event Reporting System. Alimentary pharmacology & therapeutics, 38(4), 388-396. DOI: 10.1111/apt.12385

http://www.researchgate.net/publication/242332165_Neurological_even...

Grantz, M. (2010, September). Unusual peripheral neuropathies. Part II: intrinsic reactive causes. In Seminars in neurology (Vol. 30, No. 4, p. 396). DOI: 10.1055/s-0030-1267283

http://xa.yimg.com/kq/groups/27464029/1519564639/name/incomumparte2...

Morís, G. (2014). Inflammatory bowel disease: An increased risk factor for neurologic complications. World J Gastroenterol, 20(5), 1228-1237. doi: 10.3748/wjg.v20.i5.1228.

http://www.wjgnet.com/1007-9327/full/v20/i5/1228.htm

Thank you for the references.


#20

Thank you for the references.