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Karen A: Morphea Scleroderma

Please, if anyone has any advice for me, it will be so greatly appreciated.

Kaleidoscope for Karen by Shelley Ensz I am a thirty-four-year-old female who has been bounced around for two and a half years from oncologists to rheumatologists. I have seen eight different surgeons.

Three years ago, I started to get a hard spot on my stomach, to the right of my spleen. I was told it would go away. I then got a bigger one on my left breast, on the same side as the one on my stomach.

I had it biopsied a year ago, and it was benign. Since then, both sites have grown nearly three times their original size and have turned brown, and become very tight. I was sent to two oncologists, eight surgeons, and finally a rheumatologist. The rheumatologist recommended that my doctor biopsy both of them again. My doctor did, and my results were morphea.

I was first told I had Non-Hodgkins Lymphoma (until the blood results showed differently.) Then I was told I had Lupus (but the blood work indicated not.) So, now I have Morphea. My SED rate, I am told by my doctor, is 85, and it is supposed to be 0-20. I run a low-grade fever of 100 degrees every day, and I am tired, achy and feel terrible. I keep telling my doctor that when I wake up in the morning, I am so dehydrated that I vomit bile sometimes.

I feel horrible and when I take a deep breath, it hurts deep inside my back on the left side, about where the mass on my left breast ends. I am afraid and worry about my future and my kids' future. I am being sent to a dermatologist soon, and my doctor told me they will probably take deeper biopsies.

The affected areas are both hard, brown and lumpy. They feel hot to the touch and seem to hurt deep in side. I just worry that all this time has gone by, and it has spread deep inside me. I feel worse each day, and not one person in my family understands what I am going through. They are as confused as I am.

I have a sinking feeling that the pain in my back is a kidney that hurts. They also found a small 1 cm benign tumor inside my left adrenal gland over my left kidney a year ago. I am having another CAT scan done to further examine its growth. I am so scared. That is exactly the area that feels like something big is hurting inside.

Please, if anyone has any advice for me, it will be so greatly appreciated. Sorry for such a long post. I have been through so much, and finally have a diagnosis: Scleroderma/Morphea. What kind, is what I am also wondering. Please write if you have any advice. I do not understand why I have more serious of symptoms?

To Contact the Author

Karen A.
New email address needed 09-26-06 SLE
Old Email Prefix: Rainlover067
Story posted 4-9-01

Story Artist: Shelley Ensz
LINKS
Lupus
Morphea Scleroderma
Go to Karen C: Daughter of Diffuse Scleroderma Patient
 
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