My name is Dona Morris and I have systemic scleroderma. The doctors believe it started in December 1988. I work for the Police Department in DeQueen, Arkansas. In mid-December we were involved in re-qualification exercises and I fired a large number of rounds in my .356 revolver. We also dismantled our weapons, cleaned and reassembled them the same day. The next day my hands were painful and swollen and I thought it was because we had fired and cleaned our guns on the same day - something we normally do not do. But the problem did not get any better. I couldn't turn the key to start my car without padding it with a tissue. I couldn't play my bass guitar.
My family doctor tried several anti-inflammatory drugs, all without relief.
He began to suspect carpal tunnel syndrome as the pain was now all the way up my arms. I tried chiropractic treatments to see if they would help. In March of l989, I had surgery on both wrists to relieve the pressure. The left hand improved but the right hand remained painful and I was unable to use it. Finally the doctor started giving me cortisone which was the only thing that relieved the pain. During this time I had a spell of severe fatigue which lasted ten days.
In October of 1989, I had surgery again on my right hand opening it into the palm where he found scar tissue binding the nerves. I had driven a school bus with a stick shift for years and believed that had caused the scar tissue and now my troubles would be over. How wrong I was!
About a week after the surgery I began to have joint pain which got progressively worse. My feet became swollen and it was painful to walk. Also, it felt like there was something in my throat even though I knew it couldn't be since I could still swallow several vitamins at a time. My family doctor was mystified but took a blood sample and gave me a one week supply of cortisone to give me some relief from the pain. From blood tests, my doctor thought I possibly had lupus and sent me to a rheumatologist where more tests were done. I was in a terrible state of mind having been in constant pain for a year now. I had always been a healthy person who ate right, took vitamins and walked two miles almost daily for several years. I couldn't understand why I was having all this trouble.
In January 1990 my fingers began to get contractures. A full muscle biopsy was done. Finally I was told I had limited scleroderma and given a prescription for Disalcid. It took a year to heal from that biopsy. I knew I did not have limited scleroderma because my throat was already affected. I asked my family doctor to send me to Scott & White Diagnostic Clinic in Temple, Texas for a second opinion. After numerous tests they said is was classic systemic scleroderma and that both my throat and lungs were affected. My skin was already darkened, and the skin around my mouth was tightening and limiting my ability to open my mouth. The skin all over my body was tightening.
I had already been in touch with the support group in New Castle, PA and had read all their information. The doctor started me on penicillamine, ordered blood work every two or three weeks, and sent me home with instructions to return in June.
I couldn't tolerate the penicillamine, but when I went back the rheumatologist offered no other treatment. My skin was getting tighter, getting dressed was extremely difficult and I couldn't brush my back teeth or bite a sandwich. Getting up from a chair was a struggle and I needed help. I went up and down the stairs like a baby would. The head of my bed was raised to prevent reflux into the esophagus. I couldn't fold my arms, reach up into a cabinet or pick anything up off the floor. I couldn't sleep through the night because I hurt ... hurt .... hurt. But worst of all was the sense of hopelessness. None of the doctors I had seen or read about knew what caused scleroderma or what to do for it. I was 55 years old and felt as I imagined someone 95 might feel. My husband was very supportive and patient with all my groanings, but he didn't know any more than I did about what to do.
It was through our minister's wife that I learned about someone in Bentonville, Arkansas who was taking an antibiotic for her scleroderma. She got the name of Dr. Brown's book and our librarians found a copy for me.
I was reading it when I was sent to another rheumatologist. This doctor said the antibiotic treatment wasn't effective and intimated Dr. Brown was a quack, yet he had nothing to offer me.
My family doctor started me on the oral antibiotics in September of 1990 and in January of 1991 a doctor in Alabama prescribed the intravenous Cleocin. The IVs were administered by our state home care program. My skin was so hard they had difficulty starting the IV without blowing the vein since they had to push so hard to get through the skin. But as time went by my skin softened, the redness and soreness left my hands, and the open sores on my knuckles healed. Gradually the joint pain lessened and my feet began to feel normal. My throat problem improved. My range of motion has improved greatly and I only have mild joint pain when the seasons are really unstable. I can get up from chairs normally, go up and down stairs normally and even do floor exercises. The nurses who began my treatment were amazed at the difference in my condition as time went by.
I am still in treatment, although I am now with a doctor who has experience with this therapy. I don't know how much longer it will take, but it doesn't matter because it is working and I now have hope.
UPDATE April 15, 1999
I love to hear from people who are looking for a treatment that works, and I can certainly testify that Dr. Brown's treatment has worked for me. A portion of my story and a picture of me, taken in 1997, demonstrating my ability to climb a ladder and wash the outside windows, are included on page 305 of Henry Scammell's book "The New Arthritis Breakthrough".
I have been in treatment since 1993 with Dr. John Sinnott of Ida Grove, Iowa, who wrote one of the chapters in Dr. Thomas McPherson Brown's book, "The Road Back". I continue to see Dr. Sinnott for a yearly checkup and blood tests. In June of 1997 we decided to try discontinuing my intravenous treatments since there had been no change in my condition or the blood tests for some time. However, Dr. Sinnott wanted me to continue the oral portion of my treatment (100mg. of Minocycline twice a day, 3 days a week), which I did until last June (1998), when we cut that in half. My blood test in 1998 was still good after having been off the IVs for a year, and I fully expect it to be good this year since I'm feeling fine. I have good energy and really have no remaining symptoms of scleroderma, except my finger contractures, which Dr. Sinnott believes will be permanent. I do have better closure of both hands now as I continue to use them. I'm back to playing my big bass fiddle in our bluegrass band and having a great life thanks to God and Dr. Brown's treatment. I do expect to remain in Dr. Sinnott's care indefinitely to continue to monitor my condition.
Update July 2001
I am continuing to do well and have just been to see Dr. Sinnott for my yearly blood test. The results were good. He still has me on half dosage of Minocycline, but I feel that I would be just fine without any. I am able to do whatever I want to do, walk two miles a day, do strength training , take Line Dancing lessons, and feel fine.
Update May 2008
Dr. Sinnott and I agreed to my getting off the oral meds, which is all that I had not already discontinued. I have been off the oral meds for 6 months and have seen no changes in my condition. Additionally, beginning in 2005 I started going for blood tests every other year instead of yearly. All is still well.
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