Reply To: Your Progression of CIDP

Like GH and harryswope, mine came on quickly. Here’s how it happened for me.

I’m a 52 year old man who’s been relatively active his whole life. In November 2012, I began improving my diet and exercising. I was working out regularly, gaining strength and losing weight, gradually. About 5 months ago, I started noticing pain in my hands and chalked it up to excessive dumbbell weight. I eased up a bit, but noticed soreness in the legs and back and shoulders too. I couldn’t sleep on my side because my shoulders hurt too much. There was tingling in my thumb and index finger of my right hand and numbness began to creep up from my calves. I felt like my back was all knotted up and I sought chiropractic and massage therapy. One day, as things were getting worse, the chiropractor asked me to walk on my heels. I couldn’t.

I was referred to a neurologist, who was puzzled, after 5 MRIs, blood tests etc. I still had reflexes despite profound weakness in the feet, hands, and legs. I had been doing a lot of research (thank you gbs-cidp.org) and began inquiring to my doctor about GBS/CIDP. Finally, after a spinal tap, myelogram, and CT Scans, the doctor retested my reflexes. Now there were none.

A month ago I had a loading dose of IVIG, 2gm/kg over three days, and last week my first maintenance, 1gm/kg, dose. Fortunately, I’ve handled the treatment well, but haven’t really seen any improvement, so far. I suffer foot drop, weakness in the legs and hands, massive muscle loss, lost balance, burning skin pain, difficulty gripping anything, and sleeplessness. I take Tramadol for pain and it seems to work well. My neurologist prescribed Gabapentin, but it’s had no effect on the pain.

I sleep a couple hours in a row, in my recliner downstairs, though I may fall asleep in my bed initially. I now walk with a cane to maintain balance, use a shower seat and handheld shower. Recently my hands began contracting, pulling my middle and ring fingers across my palms. My finger tips are numb, making it difficult to type, tie my shoe laces, or button my shirt. There is something called Dupuytren’s Contracture that is believed also to be an auto-immune issue. (http://www.mayoclinic.com/health/dupuytrens-contracture/DS00732/DSECTION=causes)

The infusion nurse explained that results from IVIG therapy can run the gamut, from nearly instant results to having to wait until the first three months of treatment are complete and measuring strength to see if there’s been any improvement. If there’s improvement, they consider the treatment to be effective and the insurance company (I have United Healthcare) will approve continuing treatment.

I wish the best for you, Sarah. Keep us posted.