And Sjo it goes…

Here it is..the debut post of my Sjogren’s journey via blog. I am not a professional blogger or writer. I know very little about blogging, widgets or RSS feeds. What I do know about is the frustration of living with a complex host of symptoms that have thus far seemed to elude a definitive diagnosis or treatment. While I do have a complex medical history that  can complicate nailing down a diagnosis, I think that I am fairly typical in terms of my Sjogren’s s Symptoms and presentation.  When reading on the Sjogren’s World Forum (a very informative and helpful site), it has become clear that I am not alone in some of my experiences. I am one of very many folks who tests seronegative (that is, my blood test does not reveal the physician textbook indicators of Sjogren’s Syndrome). While I am not sure of the percentage of other people who also test negative for Sjogren’s, I do know that it is not uncommon. It is, however, frustrating. In my personal experience and those of some of the other people I have read about, there are a significant number of Rheumatologists who diagnose primarily by blood test results and minimize  the physical symptoms of SS in the absence of positive blood indicators. I am certainly not generalizing that this is the standard of care for all Rheumatologists, just the ones I have seen to date. I am hopeful that I will find the appropriate physician who will connect all my dots in spite of their presentation. And Sjo it goes..I am off to educate myself about Sjogren’s Syndrome; how to live with it & treat it with an occasional dose of venting along my very parched and dry way.

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
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4 Responses to And Sjo it goes…

  1. cargillwitch says:

    so great to find a another blog dedicated to helping those of us with Sjogrens find community and a worldwide voice! thank you.
    Look forward to hearing more from you

    • vitalsignspgh says:

      Thanks Cargillwitch. I think it really helps to connect to others who are traveling the same (frustrating) journey.

  2. Rock says:

    I was recently diagnosed with SICCA Syndrome based on my what my optometrist and dentist reported. My Rheumy said that because my bloodwork came back negative, I did not fit the criteria for Sjogrens. My blood work was faxed to him from my pcp, so he had my bloodwork in hand before he even seen me. I think he had already made his mind that because my blood work was negative I did not have Sjogrens. thus diagnosed me with SICCA syndrome. I felt like he dismissed my joint pain, muscle aches, fatigue and all the other lovely things that go along with Sjogrens. He prescribed plaquenil and sent me on my way. He said that he did not feel a lip biopsy was necessary, because if it came back positive, he would not change his course of treatment. I do however find it rather contradictive for him to tell me that I do not have autoimmune, because my blood work does not support that diagnosis, but yet chose to treat me with a drug used for autoimmune. It’s all so confusing. I feel that a correct diagnosis is important, not only for the physical and systemic risks associated with autoimmune diseases, but for our mental well being as well.

    • vitalsignspgh says:

      I know Rock. It can all be so confusing and convoluted. I like a good mystery, but this medical one has gone on way too many years!

      SjoDry

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