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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?

#107

How wonderful for you . A friend of mine has a son in Washington and one of
my late mother’s writing friends lives there .

I hope you feel good today and everyday , every chance you get .

miigwetch ,

Rita

#108

Campylobacter

#109

WOW! This thread covers a lot of ground.

My CIDP has gone into remission about 95%. I no longer walk with a cane and am solid muscle (except for left ankle muscles where I have a foot-drop, however I may overcome this with applied PT). As I mentioned for years in this forum: swimming keeps me fit to counter CIDP ( for 4 years so far). I swim every other day about 2 miles in a pool and I swim hard. I do complete range of motion exercises while swimming by using a float board, swim fins that float, and gloves that increase the resistance. And I walk with small weights (8 or 10 pounds) about 1-2 miles each day, rain or shine.

I still get 240 infused grams of IgG each month and have been taking Imuran for 3 years. The cost has sky-rocketed to $116K/mo for IvIgG treatments. I average about 30 hours of relapse each months, soon after IvIgG infusions and they are hell, but it makes me remember how freaking horrible this disease is. However, I use medial marijuana for these hours of relapse

What I still don’t understand is why HSCT is not made available to CIDP patients like me as the cost in nothing compared to what 10-20 years of IvIgG treatment for me will cost… millions. It’s crazy!

#110

I had been driving myself to exhaustion, trying to have an active career as a composer and professor. I traveled a lot, and had a lot of projects. Not getting a lot of sleep, and wound up with a high dosage of Ambien for a number of years. Things came to a head in 2006. I was trying to come up for early promotion to full professor, but the dean wanted still more from me. I was at a conference in Oregon, and wound up with a major stomach issue, with 2-3 days of hurling, something I have rarely done, so it was kind of traumatic. Afterward, I did not feel right at all. Adding to my unease, I decided to ditch the Ambien and switched to something better. The transition was very tough, but I got through OK.

Three months later, I awoke on a Saturday morning, put my feet on floor, and felt them tingling. I just thought, oh crap, this is bad. By Sunday, my lower half was numb. I went to the emergency room, where my blood pressure was through the roof, even though I was taking medication. The ER doc thought that my high blood pressure was causing the numbness. Went to my family care clinic and was seen by a colleague of my vacationing doc. I was getting weaker, but the doc had no clue, telling me to wait until my regular doc returned. Things got worse, my legs began to buckle, I couldn’t lift my arms, etc. Finally, on the Sunday of the week following the first ER visit, I went in again.

I got the royal treatment by the ER staff, especially since the late night shift was changing to the morning shift. I had a small crowd of residents, grilling me with questions. As soon as one of them asked if I had had any stomach virus or the like, and I knew from my internet reading that he was thinking GBS. Eventually, this was diagnosed as CIDP. After two relapses at my local university hospital, the docs got me into the Mayo Clinic. I can’t stress how great that experience was, in terms of diagnosis and care. They were very aggressive with the ivig and prednisone. After two months, I was back home, getting ivig treatments for the next two months.

I returned to teaching a month later, but it wiped me out. But I stayed with it, until last year, when I finally had to give up and go on half-time medical leave. I’m able to go in two afternoons a week, but sometimes have to miss, due to the pain.

Pain, pain, pain. All is pain. All of my decisions have to take pain in account first and foremost. MJ helps, but the oxy is the most effective med I’ve tried.

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#111

We got legal med cannabis here but they take so long to get it together . But I am hanging in there . Rita

split this topic #112

A post was split to a new topic: My holistic approach

#113

Although I would agree that stress and anxiety can exacerbate any condition I cannot correlate it to my situation. I had much more stress in my early life and much less in my later adulthood. My CIDP symptoms came on gradually and was not diagnosed until 65 years old. I’m sorry but i just can’t embrace a holistic approach as you and your link suggests. I lean more toward science. The “Heal Documentary” link reminds me too much of Scientology…but I’m from the old school of thought…no offense meant here…just speaking my point of view.

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#114

My CIDPstarted 6 months after my 2 back surgery where a flexible fusion was installed with screws, wires and spacers. It started as tingling in tops of big toes and rapidly spread around to both feet, up lower legs and into thighs. It was active and spreading for 2-3 years. Then it stopped spreading and I was able to reclaim lost strength. However all of the pains from damaged nerves continues unabated. In fact the pain when I medicated is unbearable.
Today I live under constant pain control with an implanted neuro stimulator that helps mask leg pain. Fentanyl transdermal patches, hydrocodone and others.

#115

Larry I’m very sorry this has happened to you and all of us. I’ve written previously that in order to deal with pain you must go see a pain management doctor. Your neuro is a miracle for getting you diagnosed and treated, but Neuros will do virtually nothing for pain due to the risk to their practice. My neuro told me that exactly! He couldn’t risk the money machine of his practice to the potential risk of scripting pain meds. So you must see a pain management doctor in order to feel better!
They all start at the lowest doses of everything too. So if it’s not enough to make you feel tolerable, you must ask for more quickly and consistently.
The most effective for me is the Fentanyl transdermal patch with hydrocodone to combat what they call “break through pain”. Don’t worry about being addicted because unfortunately once in pain with CIDP, unlikely that it will ever dissipate . At least it hasn’t for me. Nerve damage to the myelin sheath, does not heal itself effectively. God bless! Bill Scott Houston Tx

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#116

I also use a fentanyl patch and a few oxys for breakthrough pain.

The forum is a lifeline.

thanks
larry

#117

When you first put it on, does the patch mess up your sleep?
My experience on night one with a new patch is I don’t get much sleep! Even with sleeping pills like unisom, it’s a tough night!

#118

Can you tell me if you get muscle twitches? I was told GBS but I was ill for 4 weeks it peaked and for about 10 days I was doing a little better then fell ill again for another 2 months before I started to improve. My face was completely numb and my right side aroind my nose and right eye still stays numb. Plus my right eye gets blurry it was blurry from the beginning but sometimes it will clear just to get blurry again. I am worried if I may develop CIDP. Thank you

#119

I don’t notice much difference when I change patches. Mine are 72-hour, but
I have waited another 24 hours, at times. Sometimes I don’t even notice
that. Other times, though, I feel a tiny hint of withdrawal symptoms, in
the form of sniffles. Once I “get right,” the sniffles disappear within an
hour.

Sleep is a big problem. I rarely sleep more than two hours these days. I’ve
started using Benadryl before bed now, which works somewhat.

Keep hanging in there. I don’t know about you, but I have made my peace
with this condition, although I have had to curtail a lot of activities,
including teaching. Arrgh.

larry

#120

My CIPD started when I took a shot of Stelara on Feb 11, 2017. I was training for a half Marathon; I ran 10 miles on Feb 25, squated 140 lbs 30 times on Feb 26, on Feb 27 I tripped a little going up some steps and 3 days later couldn’t walk. I haven’t been sick in years, maybe a cold here or there but not the flu or anything else. So we are sure that the Stelara kicked off my CIDP. I have had two relapses, but because it was caught so soon I have moved from wheel chair, to walker, to cane, to just dealing with balance issues (especially careful with steps), fatigue, and sleepless nights. With CIPD it seems we are always waiting for the other shoe to drop, so just taking it a day at a time.

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#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.