Connect
Long Story--Sorry What Questions Should I Ask the Rheumatologist?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
@covidstinks2023
Thanks for the explanation. This IS a new treatment to me. Many years ago, I had the same condition, which eventually became full blown Graves' Disease. I had a heck of a time explaining this. At this point, over thirty years later, I have acquired hypothyroidism, no thyroid tissue at all but positive anti-thyroglobulin and TPO. I'm still trying to understand, but it's definitely autoimmune. I used to call it the "combo platter."
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!
-
Like -
Helpful -
Hug
3 Reactions@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?
-
Like -
Helpful -
Hug
1 Reaction@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
-
Like -
Helpful -
Hug
2 ReactionsSee Connected Rheumatogy on u tube. It's a great resource with coaching on how to maximize your conversations with rheumatologists, which are always a bit shorter than we like.
-
Like -
Helpful -
Hug
2 Reactions@sweetundine
Oh my, "a bit shorter than we like" ! My goodness you are correct!
I had the appointment that I have waited month for today. Drove 140 miles down. TEN minutes including the time it took to schedule a follow up. Then 140 miles home. Ugh.
I'll check out your suggestion of Rheumatogy on u tube. Thank you! 🙂
@intheorchard I feel you. 10 minutes. I managed to get pneumonia last week, which my very smart rheumatologist recognized over a virtual visit. Since she is an hour and twenty minutes away, I went to a local primary card center where I live for a hands on exam. It was the equivalent of speed dating. A new face across the table. Hit the bell. 10 minutes to tell them all about myself. (what one of us can do that in 10?) Hit the bell. Next in line. All we can control is our our own side of the conversation.
@intheorchard do not rely on doctor Google because so many other factors come in to a diagnosis. I use doctor Google ONLY to help me get a list of questions to bring with me for my visits. I keep them in Google Keep where I jot them down and then bring them to appointment. I make sure to go over my questions before my appointment to be sure they are relevant.
Again, doctor Google, ChatGPT, or any other AI should not be used to diagnose yourself. I'm so fortunate that I have a great team for my health - a naturopath primary, a rhuemtogist who always ask if she has addressed my concerns, a cardiologist, and a dermatologist. I never feel dismissed or shirt changed with my visit.
-
Like -
Helpful -
Hug
1 Reaction@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. 🙂
Sjogren’s can cause a lot of issues. Recommend the Sjogren’s Advocate website. She is an MD who got Sjogren’s. She has a lot of really excellent information and questions/handouts for doctors.