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Elaine GH: Limited Systemic Sclerosis

I tell everyone I meet about scleroderma. I have joined two support groups and bought all three editions of Voices of Scleroderma.

Lavender Rose for Elaine, by Sherrill Knaggs, ISN Artist After getting a diagnosis of Undifferentiated Connective Tissue Disease (UCTD) due to symptoms of carpal tunnel, fatigue, poor appetite, and indigestion —by a very experienced rheumatologist who is an old friend of mine, I left with a copy of my blood results and a prescription for plaquenil. My husband is a very smart surgeon, but he accepted the diagnosis, which was no big deal. Some people with UCTD spontaneously get better.

I began to research my abnormal chemistries and looked at the abnormal chemistries for UCTD, of which I had none. Myabnormals (SCL 70) were linked to one disease and that was scleroderma. When I called the doctor, he said, "It is impossible for you to have scleroderma. Stop reading the internet." My husband agreed.

I kept secretly searching, because I didn't believe them. I found a prominent rheumatologist at a local hospital, known for research on lupus and fibromyalgia. I made an appointment to see him. I asked him immediately if I had scleroderma. He examined me and said matter of factly, "You have systemic sclerosis, the diffuse version." He put me on prednisone for two weeks.

I had told my husband the day before to be prepared for this diagnosis, and believe it or not, I didn't cry or feel shocked. I had prepared myself for this diagnosis.

In the next week, I had all kinds of CAT scans and an echocardiogram and they were all normal. I attributed this to early diagnosis.

I still wanted a second opinion, so I found a doctor at UCLA who is known to specialize in scleroderma. I got an appointment in February. In the meantime, my husband wrote to a colleague in Israel, who had been at University of Pittsburgh many years ago and knew of the research they were doing on scleroderma. He suggested we contact Dr. Medsger, which we did. Within two days he talked to us on the phone for a half hour and told us to see the physician with whom I already had an appointment. My husband called UCLA and moved the appointment up to January 4th.

We went to see Dr. Furst, who did an extremely detailed history, and said very kindly, that he wished I didn't have scleroderma, but that I have the limited form at this time (no guarantees). The funny thing is that people with the limited form don't usually have the SCL 70 abnormality, and they usually have CREST, which I do not have. Most people present with Raynaud's, which I don't have. Nonetheless, this is what he told me and I'll take it, since this form of the disease is a better diagnosis.

I am taking medication to soften the skin (Methotrexate) and Prilosec for GERD. There is nothing to take for the numbness (Also unusual) that I have in my face, teeth, tongue and lips. It is annoying but not painful.

My attitude is super positive. I tell everyone I meet about scleroderma. I have joined two support groups and bought all three editions of Voices of Scleroderma books. I attended my first scleroderma meeting two weeks ago and the people were wonderful. I wrote a little poem for the meeting. I do write doggerel verse and most of my poems are much better than this one. The problem was finding words to rhyme with scleroderma.

I hope you're standing on terra firma
Cause I just found out I have scleroderma
I didn't get it from Auntie Irma
And it's not a virus or even a germ-a
People get it from Biloxi to Burma
And it's quite complex, there's a lot to learn-a
My skin is tight and rather firm-a
And my stomach is slower than an earthworm-a
There's lots of research and support so I turned-a
To Dr. Furst, who's an expert in Scleroderma!

To Contact the Author

Elaine
Email: [email protected]
Story edited 12-21-06 JTD
Story posted 02-07-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Difficult Diagnosis
Diffuse Scleroderma
Limited Scleroderma
Limited Scleroderma Stories
Raynaud's
SCL-70 Antibodies
Scleroderma Experts
Scleroderma Experts: California
Scleroderma Symptoms
Types of Scleroderma
Undifferentiated Connective Tissue Disease (UCTD)
Voices of Scleroderma book series
What is Scleroderma?

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!

Go to Elaine L: Scleroderma
 
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