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Kathi: Scleroderma/Lupus

Then the send-you-to-all-the-specialists-we-can-think-of- because-we-just-do-not- know routine started.

Parakeet by Shelley Ensz I am forty-three years old and have not felt well for ten years. I worked for the parks and recreation department in the city in which I lived for seventeen years, and that is where my story begins.

I was a senior programs coordinator and also taught arts and crafts. I started having problems with my hands not functioning. I was dropping things and had severe pain in my back. I was sent to a neurologist who did several tests and, at the time, he thought I had multiple sclerosis (MS) with severe carpal tunnel syndrome, bilaterally. MS was never confirmed.

I had bilateral surgery on my hands. A repeat EMG (a neuromuscular test) six months later found the condition was worse than before the surgery. There were other things going on: choking on everything I ate and a terrible burning sensation after eating. An MRI of the spine showed severe stenosis in almost every disc. An MRI of the brain showed nonspecific signal in the white matter, and an esophogram showed mild dysphagia (difficulty swallowing).

Then the send-you-to-all-the-specialists-we-can-think-of-because-we-just-do-not- know routine started. The family practice doctor said he felt it was fibromyalgia; the neurologist said probable MS; and the osteopath said, "I really think you have some connective tissue disease, but that is not my field and until you find out, I really do not suggest surgery on your back."

In the meantime, I had more tests. A pulmonary function test (PFT) showed a lung problem. Blood tests showed chronic hypoglycemia and a consistent low white blood cell count, along with a trace positive for cryoglobulin. I felt like I was totally crazy and went to a psychologist, only to be told that depression is normal with these types of medical problems.

I had to stop working because after eight hours, there was nothing left of me for my family. The fatigue is terrible, and I have had to learn how to pace myself, not easy with a Type A personality. Not knowing what is wrong is the worst feeling in the world. You know your body and you know something is wrong, but the professionals cannot seem to figure it out or agree on anything.

Finally, I got to see a rheumatologist who read my chart, which at this point was a novel, and he asked, "Have you ever heard of scleroderma?" My immediate response was, "You mean like that movie about Bob Saget's sister?" When he responded,"Yes," I was speechless.

I now understand not everyone with this disease has it quite the same way. It was such a relief to know what I was dealing with; that I am not crazy. At this point, I have never had positive antinuclear antibodies (ANA) or any of the antibody tests for scleroderma, but according my rheumatologist, just looking at my skin says all that needs to be said.

I do have awful Raynaud's phenomenon, and telangiectasia have started to appear all over my arms and face. I have had several mammograms this year. My breasts on both sides are full of calcifications, which are not in the breast tissue, but not fully in the skin. My rheumatologist thinks it might be the scleroderma, and after a biopsy, the surgeon seems to agree.

I know now that the brain MRI showed vascular attacks due to the scleroderma. The attacks result in terrible migraines. I have tried several antirheumatic drugs and so far nothing has worked. I have refused steroids, because after much research I decided the side effects of steroids were as bad as the disease. I have agreed to try another arthritis medicine now, because my rheumatologist says we have got to slow this down. If it reduces the pain just one iota, it will be worth it.

To Contact the Author

Email: [email protected]
Story posted 2-18-02
Story Edited 7-28-03 JTD/V1

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Carpal Tunnel Syndrome
Difficult Diagnosis
Dysphagia (difficulty swallowing)
Lung Involvement
Multiple Sclerosis (MS)
Positive ANA
Voices of Scleroderma Volume 1

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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

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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Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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