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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#121

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?


#122

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.

larry


#123

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.


#124

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.


#125

I became unwell within 2 weeks of having my flu needle


#126

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.


#127

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


#128

i originally created this thread. HOW WRONG MY HEARDS
OF NEUROLOGIST WERE! I have MULTIFOCAL MOTOR NEURON NEUROPATHIES or DIABETES. THEY STILL DON’T REALLY KNOW. MRI today and a SPINAL TAP… AGAIN AND AGAIN

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