Chris D: Systemic Scleroderma
About eighteen months ago my entire body began going haywire
My name is Chris. I have always identified myself as wife to an amazingly tolerant man, Mother of four adult children, and all around nut-job. I can now add "lives with systemic scleroderma and fibromyalgia" to that list as well.
About eighteen months ago my entire body began going haywire. At first we thought it was stress-related from my job. My dentist told me I was clenching my jaws (probably due to stress) hard enough that I had cracked two teeth in half! My GP thought I had developed an ulcer, probably from stress. Then the ulcer-like symptoms turned out to be a gallbladder that wasn't "squeezing".
After it was removed, we hoped all the other symptoms would clear up. But, instead they exploded! Pain I was assured was either from clenching or from the lazy gallbladder didn't go away, but continued to get worse.
One morning, shortly after the surgery, I was brushing my hair and noticed my finger felt funny. It was snow white! Later that day my toes did the same thing. I was sweeping the floor and half my foot went cold and white! I was thinking blood-clot from the surgery, but my GP assured me it was Raynaud's. She did a blood test looking for lupus, since I was 40 years old and had never had digits go white before. I was told my ANA came back Negative, so not to worry.
Then I began dropping my feet when I walked, tripping constantly. I started dropping everything. Generalized muscle weakness combined with numbness and needles-and-pins in hands, face, feet, and left arm started the hunt for MS. My brain scan was clean.
The clean MRI was the beginning of my trip on the merry-go-round of neurologists. The first one told me I was crazy! The second misread a neck and spine MRI and told me I had irreversible nerve damage and wanted to hand my case over to a pain specialist.
My GP sent me to a neurosurgeon to see if the supposed nerve compression could be fixed. The neurosurgeon did three completely awesome things for me. First, he told me there was nothing wrong with my neck, only a little arthritis and a bone spur. Then he referred me to a another new neurologist as well as a rheumatologist. Thirdly, when my hubby and I were discussing what a rheumatologist does, he randomly added scleroderma to the list of things a rheumatologist treats.
I know doctors rarely ever do anything random (besides tests) so I began asking everyone about scleroderma. And I began getting laughed at by everyone I asked. Even the rheumatologist was poo-pooing me, until she looked at my most recent labs. All of my ANA tests over the last year, including my original one, had come back positive with a Nucleolar pattern. Just like that, all my symptoms started making sense and fitting together to form a bigger picture.
I have been diagnosed with systemic scleroderma, gastrointestinal reflux disease (GERD), Raynaud's, fibromyalgia, and suspected Sjogren's syndrome. I am still early in my diagnosis and am undergoing test after test after test to discover the extent of my current systemic involvement.
As I understand it, I am one of the lucky ones. It only took a year-and-a-half for my diagnosis where many have waited as long as ten yearsfor theirs. I'm lucky and thankful to finally have an answer!
To Contact the Author
ISN Story Editor: Judith Thompson Devlin
Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
This Story is Featured in Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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