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

Posted by intheorchard @intheorchard, May 8 9:44am

I'm sorry for the long story--I'm going to try to sum it up quickly.

I only go to the doctor once a year for prescription renewals. This is probably because I was completely ignored 25 years ago when I went in multiple times for symptoms related to undiagnosed hypothyroidism/Hashimoto's. I was dismissed and even told by a male doctor that "women just forget what normal is like after they have a child". When pregnant with my daughter, and desperate to keep her, I asked the doctor to test my thyroid. He replied that he had no reason to. I insisted. He did. So you know the result of that. Fast forward. So during the past six years, when I go in for that prescription refill and one for high blood pressure, I have complained of chest pain when at rest or when lying flat. It is intense and scary. Waking up at night gasping for air. I of course have been dismissed. I was told that I could see someone about my anxiety. I am not anxious. One visiting doctor told me that I was just nervous meeting him for the first time and that was causing my palpitations. Last summer, I finally had to break my not going to the doctor rule when the rashes I had been experiencing for six years showed up on the soles of my feet and made walking nearly impossible. Evidently, it is psoriasis/psoriatic arthritis. I do admit that the delay in that diagnosis is my fault as I never mentioned the rashes--not being able to breathe seemed more important. I will say that I have switched to a female doctor who does seem to listen, but I simply don't know what to ask anymore after enduring years of near-retirement rural doctors.

Finally, my question for this post: the doctor ran an autoimmune blood test. Obviously, ANA was positive. But the Sjogren's b number was quite high. Anticentromere b antibodies as well. From my understanding these do not correlate to psoriasis or psoriatic arthritis. Last November they referred me to a rheumatologist who was booked out until May this year. So, I have that appointment next week. I am dreading it as you probably know by now, I don't have a lot of faith in doctors. Anyone have similar test results or any suggestions on questions I should ask?

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Profile picture for intheorchard @intheorchard

@nanied Oh I was only joking about Dr. Google. In the end, no list would have mattered anyway in my long-awaited first rheumatology 10 minute visit. It was definitely a no questions allowed kind of thing. Basically a confirmation of what was already diagnosed by the GP with a side of osteoarthritis added.

I do understand about the dangers of self-diagnosis. Unfortunately, where we live it is often the only choice.

I'm glad you have such a good team. It must give you great comfort to know that you are in such capable hands. 🙂

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@intheorchard it does. But I question them if something doesn't sound right. And, I don't feel cut off because of it. Don't let a doctor prematurely dismiss you. They are there to help you.

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