Case history of CIDP
My name is Edward Sullivan and I just turned 61 yesterday. I am a floor broker on the NYSE and a Managing Director at Bear, Stearns & Co..
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Six years ago, after the tingling sensations in my feet and in my fingers had spread to my hands and lower calf (and at the urging of my personal trainer who noticed my increasing weakness and fatigue) I went to see a neurologist. He asked me a few pertinent questions, asked me to walk a straight line and concluded that I definitely had a neuropathy. But which one: he couldn't tell. He then informed me that I would have to undergo a myriad of tests in order to determine what my neuropathy was. Six months later, after seeing a half a dozen doctors, countless blood tests, EMG,s, a spinal tap and finally a nerve biopsy, I was diagnosed as having CIDP
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nerve biopsy
All during that time, I was slowly falling apart. The symptoms had spread: numbness of the face and tongue (a Porterhouse steak tasted like cardboard). I had double vision and became exhausted after walking just a few feet. One vivid memory I have is attending a dinner with several clients and during the dinner, which I couldn't taste, I proceeded to spill a glass of red wine all over the table. The guy sitting next to me thought I had had a little too much to drink, but in actuality I couldn't tell which end of the wine glass was up.
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My position as a floor broker was in jeopardy, for I made my living on my feet and they weren't working that well. I would wobble to a trade and close one eye in order to see things as they really were. At work (and even on the street) people would stop me and ask me if I was OK. And there were times l had to leave work because I couldn't control my bowel movements. Not a pretty sight. I was taking days off from work and for a short while I was placed on disability.
After my first IVIG treatment, which was a five hour drip at my home for 5 consecutive days, I felt better than I had felt in a very long time. I even had the crazy idea that I would go to a trader's convention in Hilton Head and play a few rounds of golf. After all I was dating a much younger woman who was in the business and loved to play golf. So I went to Hilton Head, played golf, danced, drank and had a great time and when I returned home I was completely exhausted and wound up in the hospital. My sister and a few close friends came to see me and they realized for the first time how sick I was. My family, along with some very close friends got me through some very rough times. In the words of Diana Barrymore, it was "Too Much, Too Soon."
It's been over 6 years now and I have come to terms with my illness, or rather my illness has come to terms with me. At present, along with the IVIG,I also take azathiaprine, cellcept and prednisone.
.All these drugs enable me to function as a floorbroker and I am thankful for that. Some of the lesser symptoms still remain and my body requires periods of rest. Being a single man, I live alone and when my illness dictates, I have the luxury of resting after work and/or on weekends.
I feel that the only thing constant in life is change and that those people who can readily accept change have a much better shot at overcoming adversity.....in other words, "Play the hand that you're dealt." But always remember: unlike the poker games you see on TV, you can't bluff life.
Sincerely,Ed Sullivan.
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