Mysterious Weight Loss Leads to Diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy )

June 4, 2014

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. It is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs and, to a lesser extent, the arms. The incidence of new cases is estimated to be between 1.5 and 3.6 in a million people.

At the age of 51, I was finally getting into the kind of shape I had always promised myself I’d pursue. I was 210 pounds of well-shaped man. In February 2013, I started feeling pain in my shoulders and hands with numbness in my fingers. I sought help from my General Practitioner, who suggested I reduce my workouts.

I got massages and saw a chiropractor regularly for another month or so, but it wasn’t helping and I was losing weight rapidly. Down 15 pounds in a short period of time and I wasn’t sleeping, due to the pain. I’d had a couple X-rays of the c-spine to see if there were any visible signs of spinal damage, but only minor age-related narrowing existed. One day the chiropractor told me to walk toward him, on my heels. My toes wouldn’t raise and the doctor told me to seek further medical help immediately.

My GP referred me to a neurologist, who began a battery of tests that included 5 MRIs, 3 CT Scans, multiple X-Rays, blood work upon blood work, a myelogram, lumbar puncture, and I don’t remember what else.

Referred to yet another neurologist, I also received EMG tests. All the while I continued losing weight and getting weaker. My gait got clumsy and I was falling frequently. My feet felt like they were on fire, the pain was excruciating. Over time, I lost over 50 pounds. Down to 165 and I thought I was dying. Not knowing what was happening was the most frightening part of it all. I began to take stock of my life and my partner, who put on a strong face for me, was secretly crying himself to sleep.

Meanwhile, Dr. Google was my daily consulting physician, and I began narrowing in on Guillain-Barré syndrome (GBS). I was scared. I read that I could end up completely paralyzed and on a ventilator for months. I watched videos of patient stories. But GBS comes on more swiftly and would have already reached its acute phase by now. Still, there was another related syndrome that comes on slower. It’s called CIDP. I suggested to my neurologist that this might be the culprit. He scratched his head and told me that I still had deep tendon reflexes, a sign that it wasn’t CIDP. He was stumped, because there was enough spinal stenosis to suggest a physical cause, but it wouldn’t explain hands and legs being simultaneously affected, a sign of CIDP.

The next visit, my reflexes were finally gone. CIDP was the diagnosis, finally, and I felt relief. I quickly began treatment of IVIG, scheduled every two weeks at 86 gm per treatment. Treatment is expensive, costing about $10,000 per treatment, and a loading dose consisting of multiple infusions. This had an immediate affect on my hands, regaining strength that had deteriorated so badly that I could not open a water bottle or trim my own nails. After a few treatments, I seemed to continue to deteriorate, so I reached out to my neurologist and asked for additional help. I was given a corticosteroid, a booster of man-made Cortisol, the “fight-or-flight” or “stress” hormone. I noticed immediate declines to the progression of the weakness, but no improvement. I ended up on disability leave from my office job.

Eventually, I got Ankle-foot Orthotic (AFO) braces to help with the lower leg weakness and left foot drop, and I got PT. These had a huge positive influence on my life. I was walking more naturally. I was falling less. Life seemed to be normalizing somewhat. I even returned to work, after 5 months.

Today, I look at life differently. I stop and smell the roses. My partner became my husband and I appreciate every day, despite there being no cure. I am blessed to have discovered the real meaning of life, one wobbly day at a time.

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