#spoonie advice
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
