As of May 2004, I am forty-nine years old. I had my first scleroderma symptoms at age twenty-two which included severe Raynaud's with some ulceration and tissue loss. I was diagnosed with idiopathic epilepsy (grand mal) at age fifteen, which is completely controlled by medication which I have been taking since age fifteen.
Over the past five years I have developed tinnitus (ringing in the ears), along with mild hyperacusis (hypersensitivity to sounds) and Sjogren's syndrome. I do not drink, do not do drugs or smoke, and I maintain my ideal weight.
There is, however, a family history: My father had scleroderma which progressed to glomerulonephitis and interstitial pneumonitus. He was treated at the Scripp's Clinic in San Diego. He responded well to prednisone and cyclophosphamide, but died two years later of lung cancer (small oat cell) at the age of fifty-nine in 1984. He had a history of very heavy smoking, but quit thirteen years before acquiring lung cancer. So there is some mystery as to whether the lung cancer was due to previous smoking or scleroderma.
The most interesting part of the story is that I went through an autologous stem cell transplant at the UCSD Medical Center in San Diego, California, in January of 2003, for treatment of Burkitt's Lymphoma. The lymphoma seems to be gone. It is now sixteen months since the transplant. My antibody tests are very much the same as before the stem cell transplant. About eight months after the transplant I developed very severe Raynaud's, far worse than my earlier bouts, and all but my pinky fingers became ulcerated. I had extremely painful attacks (the pain was worse upon reheating the hands, like the hands are on fire or have hundreds of needles being pushed through). A combination of medications has greatly improved this situation.
I also have peripheral neuropathy in my feet. This came about with the cancer treatment - it was supposed to go away, but perhaps because of scleroderma, I still have it after sixteen months. Bruxism has also been a problem especially during the day rather than at night. I have also had slower than normal restoration of my bone marrow. I must still take Procrit sixteen months after the transplant, or I will be quite anemic. I hope someone finds this useful.
Craig passed away on January 19, 2015 from complications of scleroderma. Read his obituary. We all miss you, Craig!
Story posted 06-09-04 SLE
Story updated 04-20-15 SLE
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Story Editor: Judith Devlin
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