Hi I’m Brandy I just got my diagnosis of SS Thursday. I’m very very new to this. I have a pe blood clot in my lungs they put me on eliquis and sent me to a hemotologist that’s when I found out I have SS
Hi Brandy! That’s a very dramatic way to get diagnosed. I hope that you’re doing much better now. I had a slow decline over many years and then a rather sudden downturn in both my eyes and my mouth that got me diagnosed at that point. Do you have any other autoimmune diseases in addition to Sjogren’s? It’s not uncommon for them to travel in groups.
I look forward to hearing from you more.
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Hi Stoney thank you yeah it’s kinda scary even now knowing what ihave and all the stuff I may develop. I am exhausted all the time for a long time and pain and icky feeling especially after the pe blood clot diagnoses but at least I know why I hurt and am tired all the time now. I have not been diagnosed with any other disease I got a referral to a rhumetoid Arthritis dr. I do have a positive ra factor and a positive ana I don’t know yet my mom had ra as well.
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Sounds like the rheumatologist will be a helpful visit. It’s good that you’ve had the basic autoimmune panel done already. It helps move things along. You may also want to visit the eye doctor and dentist, depending on just how severe your symptoms are.
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Yeah I hope so I saw this one 5 years ago for + ra factor and he was kind of rude. Thank you for the advice I will do that.
Ugh…the first time I saw a rheumatologist she decided from the basic blood work that there was nothing wrong with me. (even though I had pain days so bad I could barely move). Her report delayed my treatment for years because others looked at her report and told me it was just one of those things… with no real interest in looking at anything else.
It was an eye doc that diagnosed me (and he even got someone from Syracuse to come down to Long Island to administer the Sjo test to be sure.)
From there I found a rheumy that is very well versed in SS and he’s great.
Advocate for yourself. We know what we are feeling and what is or isn’t right.
Good luck and welcome to the group!
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