Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?

Larry, I take gabapetin which helps me sleep. Worked well so far, I can get 5 hours some mornings (I hardly fall asleep before 2am). I too had to give up teaching high school math after 27.5 years. How long did you teach and what subject?

49 years of teaching, but I couldn’t squeak out another year. The last 22
have been at the University of Iowa, where I was a professor of composition
and electronic music. CIDP started in July 2006. I kept a full schedule
until 2015, when I went on medical leave 1/2-time. I finished with teaching
this past December.

Benadryl works very well for me.


I use unison vs Benadryl works better for me on the nights of a new fentanyl patch where sleep is hard to find. Doesn’t dry me out as much. It calls for 2 pills but at 250lbs I take 4 and I catch some zzzzzzs.

Hi Robert,
Fairly new to this group and doing a little research on causes of CIPD. My boyfriend was diagnosed a couple months ago and believes his might have been triggered by frequent skin exposure to diesel fuel, asphalt grindings, and other paving chemicals. Did you ever file a workers comp claim or pursue a case against the prison? I can’t find much data linking linking chemical exposure to CIDP; seems mostly related to vaccines. BTW, I grew up not far from that prison.

I became unwell within 2 weeks of having my flu needle

I had an out of control gout that was misdiagnosed by a podiatrist. Shortly thereafter, I lost feeling in my legs and feet. My muscles become very weak and I have drop foot. I was just diagnosed with CIDP. I am starting therapy next week with IVIG. I am hopeful it will work.

I had GBS and very soon after CIDP. Was told by a Dr that I got GBS from eating a bad salad. Made me sick. 3 months later. GBS then CIDP

i originally created this thread. HOW WRONG MY HEARDS

Hit or miss? My live was ruined by this misdiagnosis; my wife committed suicide, i lost a house, i lost a lucrative carer playing classical guitar in Maui hotels and i am crippled and in a motorized wheelchair.

ivig was the treatment and it works, but at 240 grams per month for five years… well, WHAT you people don’t understand that it is all a crapshoot

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WOW!!! I have no words to express how sorry I am to hear your story. Very sad

I had appendicitis as well with severe adhesions throughout my abdomen. Within a week after the surgery I became very weak with severe pain in my arms and legs, muscle cramping, fasciculations, numbness, severe fatigue, tremor, etc. I had an HMO so my GP kept referring me to physical therapy and such but never a specialist. She sent me to pain management where I received multiple epidurals and injections into my sacroiliac joints with no relief, so the pain Dr ordered an EMG and nerve conduction study. Because of the results he was the one who sent me to a neurologist who diagnosed me. Then my health insurance fought IVIG for over a year until I couldn’t work anymore. I went on Medicaid and ended up in the hospital completely unable to walk. I finally got IVIG in the hospital. I’ve been getting it every since and never take it for granted. However, I’m disabled now and my life is forever changed. When I think of all the times I went to my doctor with such obvious neurological symptoms, that I needed to be referred to a neurologist, it makes me so angry.

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I had a misdiagnosed Gout. It was so bad it was all the way up to my knees. Started in February and finally resolved around June. During that time I became less and less able to walk. Diagnosed with severe muscle weakness and neuropathy with no follow up in August. I pushed for another opinion. In October, saw my neurologist, he moved fast with lots more testing including a spinal tap. Started IVIG in November. Now it’s January and I have some reflexes back. I don’t think I will ever be the same though.

Mine is easy to work out, but impossible to prove. As it is caused by a virus/infection. I had a number of “shots” to go on a holiday to Egypt early 2011 and then became very ill, shortly after I started to develop what is now known to be CIDP. It is the only illness I had for years (including colds) and I hadn’t been anywhere near a doc for years either. Never did go on that holiday :slight_smile:

I am 1000 percent sure that it was caused by a virus and then stress. I got sick with a virus and it was like a light switch. Healthy and strong at 39 and then bam. I have never been health again with a diagnosis of Chronic Inflammatory Demylinating Polynueropathy after several years. High liver enzymes at first and a back rash and bleeding gums. Then horrible sensory nerves burning in my skin, and finally nerve damage in my legs and feet, and then came the weakness. Very strange how it manifested. Wasn’t able to get a diagnosis for many years because of the way it came on. Those years were a nightmare for me. SCIG currently and able to function and

Yah I have CIDP and sjogrens, I also have lupus and antiphosolipid antibody syndrome but I believe my worst symptom were activated by a bad case of diverticulitis. I am also not a dr. :laughing:

I still have yet to pinpoint what caused my CIDP. November of 2017 I had gastric sleeve surgery, and began working out (boot camp type workouts) in May of 2018, 3 times a week. I was feeling great, lost 95 lbs and was looking forward to endless possibilities. At the end of August I noticed I was becoming weaker, this progressed until I was unable to climb a flight of stairs, my thighs felt like they were burning and it felt like I had carpal tunnel as my hands were like pins and needles at the end of the day. My primary MD sent me for a CT scan of my head to rule out a stroke, when that came back as negative I was sent to a neurologist. During this time I became weaker and was falling, using a cane and unable to get up from a dining room chair. The Neurologist ordered an EMG, and the Neuromuscular MD who conducted the test immediately diagnosed me with Gillian Barre, ordered lab work and I was scheduled for IVIG within 2 days. As my symptoms Are reoccurring my diagnosis is now CIDP. I had not been ill, nor had the flu shot or any other immunizations. So for me it is still a mystery. I am trying to have a positive attitude for my new “normal”.

I think I got it wrose after a long bout of strep and I was treated with cipro… Then years later worse again after leviquin for possible lupus…but after having a hip replacement and then the death of my daughter and husband things got real bad…maybe stress has a big part

Bless your heart, Sassy. I have had an autoimmune disease(Crohn’s) for over 30 years, so I had suffered tremendously. I had a sudden onset of numbness of right foot, leg, and thigh. Yes, I was falling and unable to get up from chairs, etc. It was very debilitating. A shot in my spine helped the pain in my upper leg, but the foot and toes never got better. A surgeon thought back surgery might help since I had some stenosis. The back surgery did not help the foot pain. I finally went to a neurologist - which I should have before a surgeon, but I needed to get back to work.
The neurologist did a multitude of tests and found out it was CIDP. I have been on IVIG for 10 months now, and am doing much much better, but still need physical therapy to continue to function and work. It is a continual process of which I will work on until I die, I am sure.
But, really, isn’t that what life is all about? We keep on working and working to become the best we can be to our family and those we come in contact with every day.

I too have been to see Dr Beydoun at Keck Medical Center. He is very knowledgeable and is a pleasant man to deal with. My Neurologist in Bakersfield , Dr Jeri Williams, diagnosed me after one visit, and encouraged me to see Beydoun for a second opinion. He too diagnosed my trouble as severe CIDP. Don’t give up! Keep trying and keep praying!!

After eight years of having the CIDP diagnosis, I am reevaluated and it seems I had MMN all the time. A whole new ball game.

I started this thread years ago and I still contend that the only sure-fire treatment is constant exercise and IvIG. I get 240 grams each month.