After ten years of extreme fatigue, depression and female disorders, paratubal cysts, endometriosis, ovarian abnormalities, uterine prolapse, chronic PID and multiple herniated discs in my lumbar spine (I have congenital deformed bones and an extra lumbar vertebrae), I am frustrated.
In 1995, at the age of thirty-five, I was initially diagnosed with lupus, with an antinuclear antibody (ANA) level of 1:1280. After consulting with lupus specialist Dr. Dan Wallace in Los Angeles and complaining of numbness from the waist down and right body weakness, I was cleared of lupus and told I had chronic fatigue and to go to a neurologist to get a spinal tap.
I was single and had to work forty hours a week to pay bills. I had no family support as they believed I was a hypochondriac. I lived with a roommate who ignored me, who worked for the Australian tourism business.
After five years of doctor visits, running out of insurance, and earning thirty thousand a year as temp/perm executive secretary, I married a caring man who let me quit working to work on healing myself.
My husband, Chris, was very supportive and took me to doctor appointments and helped me discover I had another autoimmune condition, Stiff Person Syndrome.
I am taking an array of medications while receiving IVIG (gamma globulin) infusions every two months. I have lost forty pounds and am bedridden. I am searching for a cure for my problem, although I realize it is all a mystery. I have severe leg and arm muscles cramps, joint pain and swelling, migraines, stiffness, trigger point pain, fatigue and have lost a life that was once active, bubbly and happy. I have some type of connective tissue disease but I am not sure which one. I have severe bladder retention, constipation, and no feeling in my feet and hands.
If somebody can guide me in a direction that makes sense, I would be grateful. I have five herniated discs in my spine and my neck grows worse every year. I have tried acupuncture, ayurvedic medicine, spiritual healing, and of course western medicine.
I have more to say but cannot write anymore, thank you.
Email: Withheld by request
Story edited 04-06-05
Story posted 04-18-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: