Greetings all, it’s been some time since I’ve been on the Mayo board. I thought there was a Prednisone support group. Can anyone helpmeet wth that? Thanks! Suzi
Autoimmune diseases, Bone, joint, and muscle disorders, Lung and airway disorders
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Your Doctor said you are a difficult case. Maybe he doesn't know what's wrong with you? Have you had blood work done, if so, what did it show? Can you access your test results on line via your healthcare system web site? That's a good place to start, what test results are. You'll get to understand the stuff soon. Just keep Googling and asking questions. We have to be our own best advocate! I'm F, 62. Was your Prednisone and Cellcept raised to help your symptoms?
Nope, no reason. Maybe he'll respond to my email tomorrow.
Hi Lioness, I was just diagnosed with Sjogren's. This is the genius who finally diagnosed me! My SSB was 33, a weak positive. Also some other marker for muscle inflammation. I asked the Doc in an email, is there something else wrong with me, etc. makes me nervous that you're sending it to Mayo. He brushed me off. Desperately trying to find out here via Mayo somehow what test my particular Doctor would send to them. Sounds like he does it frequently. But I certainly did not like being brushed off. Maybe he'll reply tomorrow…
The Doctor who diagnosed me with Sjogren's Syndrome 3/5/19 was ordered additional blood work which "needs to be sent to Mayo's. It's expensive, and we will contact your insurance." Wha-wha-WHAT?!? When I asked why it had to go to Mayo, what are they testing for, etc etc. he replied, "That's just the lab where we send that certain test." I replied: What is this test testing for please? Haven't heard back. Why do I see dollar signs? He asked me if I had ever thought of having a lung transplant. I was shocked to be asked such a question. I'm unwell, but nowhere NEAR that unwell, and if so, not something I would do. What I'm looking for here is a way to determine what blood work gets sent there from my particular Doctor, I'd really like to know, and don't appreciate being brushed off like a stupid child. Is there anyone who can help me or direct me? Many thanks, Suzi