← Return to Long Story--Sorry What Questions Should I Ask the Rheumatologist?

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I feel your pain! I I had very little faith in doctors also, particularly rheumatologists, because my primary Sjogren’s and RA were over eight years in being diagnosed correctly – the first two doctors were dismissive because my joint pain, swelling joints, and even the pain in my chest when lying down and the difficulty breathing were “all in my head!“ That’s what led me to write you – please have your doctor(s) do an ECG for pericarditis if you have those symptoms again( DO tell your rheumatologist about it even IF the symptoms have subsided! That was my first presentation of Sjogren’s (and 2nd,3rd&4th!). One GP (before I finally got an appointment with a cardiologist) told me that pain when lying flat on your back or on your stomach and difficulty breathing or pain in your left shoulder when you breathe can be hallmark signs of pericarditis. However, rarely does any of the literature on Sjogren’s or autoimmune diseases mention anything about it! Also get a lung CT scan as Sjogrens can present there also…along with, as you probably know, every body part / system that has exocrine glands. Though the heart doesn’t specifically have exocrine glands, the systemic nature of Sjogrens can trigger a local inflammatory response, fluid buildup(pericardial, effusion), and friction in the heart.
Other commenters have given you questions to ask concerning your Hashimoto’s or plaque psoriasis, and as much I hate using AI, sometimes accessing that function on your cell phone or computer helps you know what else to ask your doctor! You can simply ask Google to make a list of questions concerning your particular tests and these autoimmune diseases.
My best wishes to you for a rapid and healthy outcome!

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Replies to "I feel your pain! I I had very little faith in doctors also, particularly rheumatologists, because..."

@marpar123 Thank you for the reply. I hadn't thought of using Dr. Google to formulate a list of questions 🙂 .

I'm sorry that you were told your symptoms were "all in your head". I forgot to add my favorite comment in my original post--"Or we could just all put it down to you being blonde". That was the last time I went to that doctor--he "retired" (I am guessing forcibly) shortly thereafter. Yes, I am blonde, and I just forget to breathe sometimes.

When sjogren's antibodies showed up in the report, I had to look the disease up. I had never heard of it and honestly have none of the symptoms. I did have a chest CT last year. The report came back that the ascending aorta was enlarged (dr. read that and said "well it's not an aneurysm yet) and several calcified granulomas and calcifications on the hilar lymph nodes.

If I may ask, how did yours present in your lungs?

@marpar123
I'm not sure whether I've already posted this before, but it may provide some additional information for your next appointment.

Sjögren's Syndrome (SjS): Understanding the Worst Symptoms and Potential Complications
https://swaresearch.blogspot.com/2024/07/sjogrens-syndrome-understanding-worst.html