Advice needed after rheumatology evaluation please
Ten months after first asking my primary doctor for a rheumatology referral, I finally had an appointment with one yesterday. It didn’t go as well as I had hoped. I have a lot of different symptoms and pain in every area of my body. I have seen a neurologist, gastroenterologist, and orthopedist. I do have tendon tears that are causing pain, but it doesn’t account for most of my symptoms. My ortho and physical therapist think there might be a systemic tendon issue. My doctors ruled out many things with lots of tests. They only want to cover up symptoms, so I was persistent for an answer and finally got a referral to a rheumatologist. Unfortunately, he was pretty dismissive. He said he read my medical records from my primary care, he asked me questions, and he gave me a physical exam. He asked if I had a prostate exam (I am a transgender man) and didn’t know most of my current diagnoses. I also realized later that he didn’t ask me about my cognitive symptoms or check anything but the areas I already know there are tears and push on a few of my vertebrae. I asked about pain management because I am allergic to corn and derivatives which are in most pharmaceuticals. He didn’t know anything about compounding medications or herbal supplements. He recommended physical therapy and to “figure out what works for you.” At the end of the appointment he said he was ordering 4 blood tests. Repeating the 2 inflammatory markers my doctor has tested a few times and were normal, a different RA test, and one to check for muscle degeneration. He said that if those come back normal than I don’t need to follow up with him. He said to follow up with my ortho because my pain is likely due to injuries and micro traumas. And to see an endocrinologist, even though I already had a lot of hormones checked with my primary and doctor who prescribes my testosterone. And to continue with the heart monitor I’m wearing this week and the cardiologist because I could have postural tachycardia. I was nervous and felt pressured to say that plan was fine.
I got the blood work results via the lab’s app today and they were all normal. I am so upset. The doctor said someone would call me with the results. I am not a doctor, but I know there are other tests, blood and otherwise, that can be done to further investigate my symptoms. I’ve been researching my symptoms and connective tissue diseases for over a year. I feel like most medical professionals don’t care enough to dig deep into what’s going on and just pass me off to others or give me meds for symptoms.
I don’t know what to do. Do I tell the person who calls from the doctor’s that I want to follow up anyway and ask the rheumatologist for more testing? Do I go back to the ortho and have him check all of my joints, back, neck, hands and feet? Do I ask my primary for another referral to a different rheumatologist, when she didn’t even want to refer me in the first place? The original referral said “low suspicion of rheumatic cause, patient requested eval.” I don’t know.
I am just so exhausted, feel defeated, and want to give up.
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