My Story and maybe some good news

I got hammered with CIDP in April, with some small signs of trouble since Thanksgiving 2013. (Not long after a flue shot). I took the full treatment with IVIG (5 days IV initial , then once a week for 5 weeks more) with no apparent effect --in July I could not walk 4 feet without lurching, lightheadedness etc. or more than 50 yards in my yard with sticks. Could not carry my dishes, do any house work etc. Next my good doctor put me on solumedrol, a kind of prednizone. I have been getting much better, In September I could walk around house without lurching or sticks, blanked out four times, could barely type, had mid section issues but starting my second round of treatments with solumedrol within two weeks I could balance better, my hands were less fuzzy, could do more and more chores and type better. I also was put on Midodrine to close the blood pressure gap when I stood up which eliminated my dizziness and blanking out. Made a huge difference and was diagnosed and fixed by my neurologist. I do not know if its the (solumedrol with midodrine) or I am just slowly recovering on my own, but there is hope, lots of it.

Of course the future is very uncertain but day by day or at least week by week I get better. In October I saw "the nation's leading expert on G-B -CIDP " in Boston. I made the appointment months before when I was at the bottom of my disease so this was a different sort of meeting....Basically he validated all the treatment I was getting from my doctor in Kalispel Mt. , a very sophisticated medical complex. Meanwhile my local neurologist in Kalispel Montana is excellent. He wanted me to get a second opinion. I am a retired biological scientist and did a lot of researching on the treatments and have a general sense that no one really knows much about how you get or loose this disease --that IVIG works on some people, prednisol (solumedrol) works on others and some of us get better on our own (esp G-B) and some of us are just stuck with an awful disease, Roughly a 25 percent chance of each. If non work there are other possibilities but not enough empirical knowledge.

My Local neurologist seems to think its the solumedrol fixing me but the Boston Doctor says if you can get things better on solumedrol then your body has a good chance of coming back in control. We have just cut my solumedrol from one gram per week to one gram per two weeks, easing the driving. SO now (End of November) I can walk and hjke and even fish without poles, and even do 2 hrs of hunting without poles. Of ccours there is always the possibility of plateau or regression and I am ready for that, but to return to semblance of my old lie is great. My typing is back to normal, my hands are no longer cold and approaching a normal "non caterpillar feeling, likewise to a lesser extent my feet, although my anckles and soles of my feet still fell very funny even though my walking is OK. I remain often tired and often sleep 12 hours a day.

I retired May 2012 at 243 pounds, dropped 20 mountain biking before the disease and lost 40 more with the disease. I have now regained 15 and feel good. My muscles have turned from jello to hard, partly because when I was too tippy to walk I used my "total gym" a lot. I never had real pain. except bumping my toes. My CNS and mental abilities seem and seemed unaffected, just my peripherals, which seem to be recovering from my core towards my peripheral. This is a good path for some of us, and I seem to be on it. I figure I am 65 % recovered as of thanksgiving. It is very nice. My wife appreciates that even more than I.

So maybe try solumedrol. I got no help from IGIV. And get a good neurologist. Finally bless medicare and the New York State Empire Plan.

"Karl" in Western Montana

Carl, thank you for sharing your story. I see a lot of members enjoyed reading it. I hope you continue to do well.

Good story,Karl.

When they dragged my sorry bag 'o bones home from the hospital in Nov 2012, the Total Gym helped get me out of the wheelchair,then the walker.

Why do I feel like telling some Chuck Norris jokes???

Oh what the heck, since you mentioned the Chuck Norris Total Gym, and we can all use a little humor...

Chuck Norris doesn't do push ups. He pushes the earth away.
That's not a chin underneath Chuck Norris' beard. It's another fist.
Chuck Norris doesn't wear a watch, He decides what time it is.
Chuck Norris doesn't sleep...he waits.

  1. When Chuck Norris does a push-up, he isn't lifting himself up, he's pushing the Earth down.
  2. Chuck Norris can touch MC Hammer.
  3. It takes Chuck Norris 20 minutes to watch 60 Minutes.

AN update: I improved a lot from September through November, improving medically by about two thirds and socially/personally by maybe three quarters. I have been shifted to solumedrol every two weeks instead of every week to avoid possible issues with side effects. I have plateaued or bottomed out or whatever and have had no improvements (or declines) in months. But I have recovered most important things, can hike one or two hours, and so onl But I am not complaining as I m so much better than last summer. Carl

That's great, Carl! Thanks for the update!