Hello and welcome to MayoClinicConnect @change25 . We’re all volunteers but we’ve all been thru some of the same difficulties as you. Doctors kept brushing me off until I got really bad so they did a brain MRI. And then, they had no idea what they were looking at. My husband then got me an appointment at the university medical center, and they knew right away what was going on.
I know just how you feel when you Know something is going on but no one can figure it out. Has your primary care doctor referred you to any other doctors? If you are anywhere near a major medical or university medical center, I would recommend that you go there. Research the clinics and doctors first. A good rheumatologist is very knowledgeable about strange diseases.
Start keeping a journal of everything that is happening to you and things you take and how you feel. This is very helpful to the doctors.
Will you get back to me and let me know how things are going?