I went through RN school doctors are not perfect. One doctor pumped me full of Demerol for a migraine with fever. My husband waited until shift change took me back. I don’t remember due to loosing consciousness. The doctor took one look at me said I had bacterial spinal meningitis come to find count it was mrsa and my spinal count above 2800. The doctor told my husband I could have died left with seizures and migraines plus neurological damage. 2nd incidence involved gallbladder removal nicked the phernic nerve collapsed my lung. 3rd problem doctor said he specialized in AVN (avascular necrosis) and osteoporosis. The doctor screwed up my hip major. In lesss than 6 months hip loosened. Found a doctor that did specialize in it removed AVN and osteoporosis used cadaver bone replaced hip. Less than 2 days later nurse put me on the bedpan wrong dislocated new hip and fractured actebulum. I was sedated for a week given blood because of blood loss. I had plates screws and a new hip put in. Now 4 left hip replacements and fx later finding out sciatic and perineal nerve were both damaged plus the SI joint and the ischium bone you sit on is also screwed up because of the fracture. My orthopedic surgeon told me today that I will permanently be confined to a wheelchair in another year or two. I am glad you finally received a diagnosis sorry that there’s not much research into it. I understand your frustration being diagnosed with something but no research into it.
I have since 2002 when I got mrsa bacterial spinal meningitis couple of neurological side effects severe autoimmune axonal sensorimotor dysautonomia peripheral poly neuropathy, small fiber neuropathy and CAN- cardiac autonomic neuropathy. The cardiologist and electrophsiologist gave me 8 years to live 4 are gone because of the bradycardia/ tachycardia and problems with blood pressure.
I am glad you finally have an answer.
The doctors can’t figure out why all my autoimmune markers are high but I test negative for everything. I have a strong family hx of RA and the lupus rash but no positive. My closest positive is 13 for RA but you have to be 14 to be positive. The medical field is really difficult and don’t want to listen to you. It almost makes you feel like you are crazy. Have you tried researching what you have and IVIG therapy to bring up your immune system? I was on IVIG from 10-18 for immune problems. Ask the doctors about it. It’s very hard to get on to it. It helps build up your immune system.
I left the nursing field because I felt like doctors have a God complex and don’t listen.
I admire you for keep working in it.