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Beryl: Primary Sjogren's Syndrome

Australia

I was diagnosed with primary Sjogren's Syndrome a year ago through an eye biopsy as I was having trouble with blurred vision. However, my main problem is with the dry mouth. I now have small blistery lumps at the base of the frenulum under the tongue which led to an abscessed ulcer. Chinese herbs from my acupuncturist cleared up the abscess and the swelling and inflammation, but the small clear lumps remain.

I now have pain in the right side of my tongue, towards the rear. It feels like I have bitten it or maybe there is an ulcer, but I cannot see any sign of either possible problem. I am worried that it might be something more sinister.

I would like to know if anyone with Sjogren's has experienced similar problems so that I can stop worrying. Weekly acupuncture has helped with the blurry vision and sore eyes so much so that I rarely use eye drops these days.

Webmaster's Note: Please consult your medical care team for this. Tongue pain can be caused by many things, such as anemia, cancer, dentures that irritate the tongue, oral herpes, neuralgia, dental problems including gum infections (which are common in Sjogren's), and even referred pain from the heart. (Source: Medline).

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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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