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Marla: Difficult Diagnosis and Anxiety

It all started last August, when I went to my doctor with joint pain.

Pink Hebe by Sherrill Knaggs, ISN Artist I am hoping someone, anyone, out there could make me feel better because I could not possibly be feeling worse.

It all started last August, when I went to my doctor with joint pain. Arthritis runs in my family and my mom was about my age, thirty-one, when it set in with her.

He ran blood work which did not even phase me. He called me back a week later. My ANA titer was 1:80 so he wanted to run more blood work for specific antibodies. I was negative for SCL-70 and the rest of the connective tissue diseases, however, he sent me to a rheumatologist.

The rheumatologist asked me tons of questions and examined me telling me there was no evidence of arthritis or connective tissue disease and told me to never take the ANA again. Needless to say, I felt ridiculous.

I have never been diagnosed with Raynaud's but one of my toes turns white sometimes. I still periodically have joint pain.

My anxiety is out of control over scleroderma and I am on Effexor. I do not know whether to trust doctors or what.

Can someone please help me who knows what they are talking about?

I am married with a one and four-year-old. They are my life and the thought of leaving them so young kills me. Thanks for listening.

Webmaster's Note: I can understand how your anxiety over scleroderma developed, as we receive a lot of inquiries from people with this concern. As it happens, about 1 in 10 people have Raynaud's and about 1 in 5 have a diagnosed form of arthritis, whereas only 30 people per 100,000 have scleroderma. So the odds are definitely in your favor for having mild (and perhaps chronic) but not progressive or life-threatening symptoms.

The trouble with anxiety is that it creates an uncontrollable imminent sense of dread, far out of proportion to the immediate situation, and some of that can be caused by not yet understanding the real relative risk posed by various symptoms.

We commonly hear that rheumatologists tell people they don't have any symptoms of arthritis or connective tissue diseases, even when they do. Perhaps they are trying to provide reassurance, but that backfires when people know they have a symptom or two. Real reassurance would be for them to explain precisely how common it is for those symptoms to occur in otherwise completely healthy people, and to instruct people to seek medical care for new or worsening symptoms.

The idea of receiving care in the future if anything else happens is far more reassuring than being told to never have an ANA again. That all by itself could create a panic that if something worse developed, you would not receive the proper care for it. A low-positive ANA is also very common in healthy people.

Your description appears to match that of a mild case of Raynaud's, so keep very warm at all times. Anxiety will only worsen Raynaud's and any sort of pain, so continue to focus on relaxation and joy-enhancing elements of life. That should be easier, now that you have a way to put things in perspective.

To Contact the Author

Email: [email protected]
Story edited 05-22-06 JTD
Story posted 10-13-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Difficult Diagnosis
Emotional Adjustment: Anxiety
Raynaud's Stories
Symptoms of Systemic Scleroderma
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 Mars: Scleroderma with Full Gastrointestinal Involvement

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)