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Sjogren's Syndrome Support

One diagnosis after another....feeling down

Feeling down and afraid. For the past few months I have had more diagnosis added onto the many I already have. Just this week my cardiologist said he is 70% sure I have a heart blockage. The test also revealed that I have aortic and mitral valve regurgitation and mild tricuspid valve regurgitation. The cardiologist was very impersonal and I was in shock, so the visit didn't go well because I couldn't think of any questions to ask at the time.

Just when I thought I could deal with what I already have I get more bad news. My doctors do not talk to one another which makes for a dangerous situation. The left hand never knows what the right hand is doing. I thought I was building a good team but at this time I do not believe so. Since my diagnosis in 2013, I have not met a single rheumatologist who believes Sjogrens is more than just dry eyes and dry mouth. They have said so which is disheartening. I am on my third rheumatologist and throughout this journey so far, I've learned that some rheumatologists have their pick of diseases that they believe are severe. It's clear when you look around the office and their websites and see no literature or mention of Sjogrens Syndrome.

I will not give up looking. Thanks for listening!

Miss Lynne,

I’m sorry that you got handed that type of diagnosis in such an impersonal manner. It is so very frustrating for us as patients to try and deal with what we have that adding hurried, disinterested, and uncaring doctors to the mix can send us over the top! Yessi’ s suggestion about phoning the nurse practitioner is a good one. It may also be good to find a friend or family member who could accompany you to your appointments as well. It’s also hard for us to know/understand which conditions are related to SS and which are occurring quite independently. Did your cardiologist indicate if the blockage or regurgitation stems from your sjogren’s? It’s my understanding that you can develop some heart conditions with lupus, I’m not sure about Sjogren’s though.

Liz

Miss Lynne, sorry to hear you are getting hit with so much at one time. Its sad to me that Docs are still so uneducated on SS too. Funny thing is the first rheumy I dealt with insisted there was nothing wrong with me (you'd think they'd know to look for other AI). It was an eye doc who caught it and ordered the test. However, a few years later, I am still giving him info as he didn't realize it was more than dry eyes & mouth too. You will find your team so hang in there.

And I agree with calling back after the appointment with questions.... I have done that on many occasions and always had good results. I think they are used to it to a point. It gets tiring always advocating for ourselves but I can say that it does get easier. Its much more natural for me now and I leave the appointments on much surer ground than in the beginning of this journey.

Hang in there misslynne, I had 2 heart attacks and 1 stent placed. All this was before my SS was diagnosed. I know now my blockage is from inflammation. it took me 14 years to find a good cardiologist that actually does listen. He's not perfect and he still will not connect the dots to SS and my heart. I read a book I got off Amazon, "What your heart Dr doesn't tell you" Great book. I know know as long as I keep the inflammation down my heart is good. Try not to worry so much, write your questions down for your next appointment. And get a cath as soon as you can so they can fix it. Good luck and keep us updated!

Beeb

Thank you all for the kind words of encouragement and support.