All the stories sound so different. I was really hoping to read something that said, "Hey, that is what is going on with me!" I see bits and pieces here and there, but nothing I can completely relate to.
All the examples here sound like the patient is quite ill and in extreme pain. I do not really have those problems anymore. I am actually quite healthy, even though I have been told otherwise.
I first recall having extreme pain in my hands and feet when I was a sophomore in high school. I had gone to Monte Cristo ski resort in northern Utah, a couple of hours from my home, and on my return trip, my hands and feet began to thaw out. The pain was severe and I cried the whole way home.
I also seemed to always have sores on my arms and legs, like a rash; small bumps that resembled pimples. There were no other signs of trouble until I was about twenty-three years old or so.
I had been in a car accident in 1979, when I was twenty-two, and was quite badly injured, so everything that happened, I blamed on that. I had pain and stiffness in my legs and back and terrible headaches. I just kept saying, you cannot survive an accident like mine and not expect some trouble.
I had two children, and then five miscarriages! I kept thinking that it all had something to do with my accident. It was not until I was thirty-one years old and expecting my third child that a doctor said I had the cardiolipin antibody and that it was probably causing the miscarriages. He put me on prednisone and heparin and I was able to go to term with the baby. Then I was tested regularly for this antibody. I later had a blood clot in my leg and was told that it too was a result of the antibody. Okay, well that sounds reasonable.
Then one morning, I woke up and was unable to raise my arms to brush my hair or hold my toothbrush. I went to see my general practitioner who sent me to a neurologist. This quack put me through some very painful tests and told me that I had multiple sclerosis (MS) (totally ignoring a positive ANA test result).
For three years, I went along thinking I had MS. I never had another episode like the one I woke up with. I did, however, have pain and stiffness in my joints. I began having breathing problems and a simple cold would almost always result in pleurisy.
A friend suggested that I see a rheumatologist, which I did. He began the testing scenario all over again, but this one did take note of the ANA. At that time, there was not much that was clear with my results, so I was told it was a "lupus-like syndrome" and fibromyalgia. When I moved to Texas, I began to see another rheumatologist, who began to call it a mixture of connective tissue disorders (not Mixed Connective Tissue Disease). He said that it was clear something was wrong, but what, he was not clear about.
I went through a few years of trouble, mostly from the fibromyalgia, as well as some strange dizzy spells and disorientation that was determined by a neurologist to be complex migraines. She started me on Depakote for the "seizures", and I never had another spell like that again.
In October 1999, I had surgery to remove a muscinous tumor from one ovary. When the pathologist determined it to be a borderline malignancy, my doctor did a complete hysterectomy, also removing my appendix, uterus, lymph nodes, and samples of the peritoneal wall (all benign). From that time on, my symptoms seemed to disappear, aside from morning stiffness and sores on my arms, hands and torso.
Well, that is the background. I have been feeling very good for almost two years now, but my doctor here in Florida kept telling me that I needed to continue to see a rheumatologist, even though I was really not having any trouble, per se.
I went to see a very respected doctor here and he went over my history and added a few more tests to the regimen. This yielded some new results: Apparently, I have CREST syndrome, not lupus, not MS, not a mixture of whatever. That is why I am so bewildered now. What is the connection here? Do these things all overlap or mimic each other? I have a positive result on the SCL-70 test. What does that mean?
When I read some of these stories, they scare the devil out of me. Is this really that bad? The way my doctor talked, it was good news, compared to what was thought to be wrong with me in the past.
If I have this CREST Syndrome, will I develop scleroderma ? Is that what the SCL-70 test implies? I have to tell you, I have been viewing some web sites, reading histories, and seeing pictures, and I am not too thrilled about this.
Why would my doctor suggest that this is better than lupus ? It sure does not look that way to me. I think you can probably tell that I am a little nervous about this. Please feel free to send me some input. I think I could use it. I keep getting my diagnosis altered and I am just ready to pull my hair out! Why has this been so hard to pin down?
New email address needed.
Old Email Prefix: cjwoodgate
Story posted 9-9-01
Email note posted 01-18-05 SLE
Story Artist: Shelley Ensz
Multiple Sclerosis (MS)
Positive ANA, SCL-70
Types of Scleroderma
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
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Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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