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First Name
Suzi

Health Interests
Autoimmune diseases, Bone, joint, and muscle disorders, Lung and airway disorders

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Posts (15)

Sat, Jul 13 11:53am · Prednisone support group? in Autoimmune Diseases

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

Tue, Mar 19 11:09am · Autoimmune attacking my lungs in Autoimmune Diseases

THANK YOU for posting this! I am studying it out and will make some print outs for my Pulm! We're our only and best advocates. Thanks again.

Mon, Mar 18 4:52pm · Autoimmune attacking my lungs in Autoimmune Diseases

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?

Mon, Mar 18 4:46pm · Autoimmune attacking my lungs in Autoimmune Diseases

Hi Noah, you can Google it, or search on MayoClinic.org. There's a lot of info out there.

Sun, Mar 17 10:30pm · Blood work to be sent to Mayo...what are they testing for NOW? in Autoimmune Diseases

Nope, no reason. Maybe he'll respond to my email tomorrow.

Sun, Mar 17 10:18pm · Blood work to be sent to Mayo...what are they testing for NOW? in Autoimmune Diseases

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…

Sun, Mar 17 9:08pm · Blood work to be sent to Mayo...what are they testing for NOW? in Autoimmune Diseases

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

Sun, Mar 17 8:04pm · Autoimmune attacking my lungs in Autoimmune Diseases

Noah, the email above was longer, but it didn't show here. Maybe I've used up my allotment for the day? Hee hee…will try later. Suzi