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Linda's Story

    I am a 55-year-old white female who was diagnosed with Sjogren's Syndrome in June, l998.

     My symptoms began last winter.  I had taken hormones for nine years, and in January, l998, I decided to wean myself from them and use a hormonal cream.  I had just recovered from a bout with sciatica.  The doctor prescribed Prednisone and an anti-inflammatory.  In late January, I began having a terrible taste in my mouth and extreme dryness.  My tongue burned and was very sensitive to spicy foods.  Even ketchup and mustard bothered me.  I thought I had the mumps because of the discomfort and pain.  I blamed the hormonal cream and the medications for these symptoms; however the symptoms persisted long after the cream and medication were terminated.  (I mentioned the hormones only because I recently read that Sjogren's could be related to a hormonal imbalance).

    I went to my medical doctor with these symptoms, and he diagnosed thrush. He prescribed some medication, but the condition only worsened.  In February, I went to the dentist for my regular check-up only to find that I had five cavities and needed to have one tooth extracted.  I was told that I needed to practice better dental hygiene.  The dryness and bad taste were ignored.  I thought when I got my dental work done, everything would be fine.  The symptoms continued.

     In May, my daughter, who is an RN, insisted that I go see an internist with whom she worked.  Before seeing Dr. Trussel, I made an appointment with my ENT.  He wrote a note to Dr. Trussel asking that she test me for Sjogren's, and the rest is history.

     I was then referred to a rheumatologist who tested me for Lupus and arthritis.  But I was very fortunate not to test positive for those.  Dr. Trigg, the rheumatologist, put me on Salagen (for moisture) and Plaquenil.  The Salagen is very helpful; it keeps my mouth and tongue from being so dry.  But the Plaquenil made me feel terrible and gave me headaches.  I stopped taking it after a month or so.  I also began taking hormones again because of the vaginal dryness, and that has helped significantly.

     I am a high school guidance counselor, so my job is stressful at times.  I tire easily and do not have the energy I once had, but then who does?  I do notice that I am more irritable and "down" a lot more than I used to be.  I have always laughed a lot and enjoyed being around people, but now I just want to go home and do nothing in the evenings; fortunately, my children are grown and my husband is very understanding so I can get plenty of rest once I get home.

    I went back to the dentist in November and he found 5 more cavities.  I will likely have a root canal in the very near future.  My dentist has made some suggestions, and he sends me articles from time to time.  I think he feels guilty for not picking up on the symptoms himself.

    I went back to the rheumatologist this past week, and she said my blood work looked fine.  But she really wants me to use the Plaquenil, but I just don't know if I want to or not.  I think physicians over medicate.  I have yet to take a prescription that did not have side effects, and I don't need any more side effects.

     I don't know if there is a relationship, but approximately 20 years ago, I began having rashes on my arms and the top of my feet.  I would scratch until I drew blood.  The dermatologist told me I had a sun allergy and to use sun screen.  The sun screen does seem to help.  I use lots of Benadryl and lotion.  The odd part is the rash is just on my arms and feet.  About this same time, I began to notice that I could not handle anything cold.  I can't even make hamburger patties without wearing gloves.  Heat does not bother my hands; in fact, the hotter, the better.  Maybe this all ties in, I just don't know.

    I am a firm believer in natural remedies, and I am researching to see if I can find an herb or vitamin that might help.  If anyone reading this can offer suggestions, please do.  Meanwhile, I will continue to take one day at a time and praise God that I have a loving, supportive family, a good job, and great insurance!  To those of you who shared your stories, thanks; thanks, Lynne, for letting me share mine.  Linda

Story Copyright © 1998-2008 Linda

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