Jerry Paige
June 8, 2001 Good Morning; I'm 59 years old and was diagnosed with Hemochromatosis approximately 10 years ago. I share your experience with the medical profession, and the surprising lack of knowledge regarding this life threatening disease. I would love to have a pen pal, with whom to share knowledge, and questions regarding symptoms of Hemochromatosis. I'm retired and live in Duxbury,VT; a small town 12 miles west of Montpelier, the capital city. I took early retirement due to a number of ill-defined problems ranging from chronic fatigue to memory problems. I worked for the State Division of Vocational Rehabilitation for 28 years, in a variety of positions. I liked my work, and had intended to work until age 65. I've found adjusting to retirement difficult. Initially I was led to believe that cirrohsis was the only danger linked directly to iron overload. From the outset I had questions about chronic fatigue, insomnia, tremors, and other vague symptoms. I've come to accept that I'm never going to get answers to many questions regarding a host of medical problems. I have however, often thought it would be informative, and gratifying, to share information with others. I first experienced difficulty sleeping, and fatigue in my mid 20s. At the time I wondered, but soon learned that complaining would soon lead to be treated like a hypochondriac. For many years, though I felt fatigued, I was able to push through it. It wasn't until my mid 40s that I really began to have difficulty functioning. My primary care physician diagnosed depression, and prescribed Elavil. For a few months my sleep was better than I could ever remember,and I generally felt better. Then it seemed I developed a tolerance. The dosage was gradually increased, but finally reached a level where all I wanted to do was sleep. In retrospect, though I no longer trust my memory, or perceptions, it seems taking Elavil was my first step down a path that led to numerous psychiatric diagnoses, and treatments. At the time of my retirement in 1998 I had been through all the traditional treatments for depression, and was told I was one of the 2% who don't respond to traditional treatment. Somewhere along the way I lost my sense of smell, my toes started feeling cold and numb. I also seemed to have difficulty with concentration and coordination. The frustrating thing is many of the symptoms I've described are attributeable to depression. To date I've been unable to find a primary care provider with the time, or interest, in sorting out the problems. At this point I don't know if it would make any difference anyway. Sorry, my difficulty organizing my thoughts must be evident in this message. I've curtailed my written communication to large extent because of my tendency to loose focus and ramble. I'd very much like to hear from you. It sounds as though you've made the extra effort to learn about the disease. I've read a great deal and searched the web, but still have many questions. I guess I'd better sign-off now. I find my rambling irksome. I hope I don't sound totalling off the wall. Have a good day! Jerry Paige