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Ginger: Generalized/Linear Scleroderma

He basically said,"It is just cosmetic, it may spread it may not. There is no known reason why it occurs and no real successful treatment."

Lavender Freesia by Sherrill Knaggs, ISN Artist Has anyone else experienced severe muscle atrophy particularly along a nerve? How about severe muscle and fat deterioration? I have read about painful joints and joint contractures but I have not read anything regarding deteriorating muscles and tendons along nerve lines. Please read my story and let me know if you have any insight.

I was fifteen years old when I first noticed the changing color and texture of the skin behind my left knee. It did not really bother me but my mother insisted that I go see a dermatologist. He quickly diagnosed me with linear scleroderma and gave me the same story that most of us get: He basically said, "It is just cosmetic, it may spread it may not. There is no known reason why it occurs and no real successful treatment." So I went on just hoping it would go dormant and I was only concerned with its cosmetic effects.

By the time I turned twenty-three, my small patch had progressed to cover my entire left leg (only the back part), my left ankle, the top of my foot, my entire left buttocks, and several patches on my back (again only on the left side). During this entire time I was extremely active playing high school and Division I college volleyball. The scleroderma had no affect on my physical activity.

When I was about twenty-five years old I began having issues with my left ankle. My ankle would roll extremely easily. It never hurt or appeared to be sprained but it would cause me to stumble or even fall. I could not point my toe to the usual range. I could not stand on my tip toes with my left foot, and I definitely could not wear shoes with any sort of heel. Eventually this progressed into a slight limp.

I went to an orthopedic surgeon, who recommended physical therapy. After no real improvement he recommended I see another orthopedic surgeon. This doctor performed an MRI which showed severe muscle atrophy in my lower leg particularly around the peroneal nerve which runs from the knee through the ankle. With no explanation he then recommended a nerve test called an EMG. Much to his surprise this test showed that the nerves were performing normally. He was stumped, so he sent me to a neurologist. I made all of these doctors aware of my linear scleroderma but none of them knew much about it so they simply disregarded it or said it may have something to do with it.

After analyzing all the test results and my medical records the neurologist attributed the muscle atrophy to the linear scleroderma. I am not 100% convinced as I have not read much about this type of muscle atrophy particularly along the nerve.

My linear scleroderma used to only have superficial symptoms. Now, I have the weak ankle and limp, my left leg and buttocks are much smaller than my right which makes my clothes fit weird and makes sitting down for any extended period of time uncomfortable and even painful, crossing my legs is extremely uncomfortable and I experience limitations with the function of my leg during some activities. Is this just the beginning?

Any advice? Has anyone else experienced similar symptoms?

To Contact the Author

Email: [email protected]
Story edited 08-12-07 JTD
Story posted 08-21-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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!

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