Conflict between rheumatologists and feeling hopeless

My mum tried to switch me to another rheumatologist due to the fact with my first one it was hard to contact them at all between appointments, to discuss if meds were working and if they weren’t you’re simply told quit the med and wait until next review which wouldn’t be brought forward.

I started a TNF that was initially helping then became less effective no blood monitoring and no assessment of how it was going until nine months of treatment he also wasn’t really a people person and I’m autistic,I struggle to understand the information given to me often and I need patience with that.

Anyway we switched, she seemed kind, wanted repeat mri scans which I done despite that I struggle unbearably with noise and the scans are sheer hell for me, redone all the blood work etc as out of area at a new hospital and they said they couldn’t transfer details over.

I was barely holding on severely depressed before the review appointment because the injections have been less and less effective and I, losing everything again and it’s only gotten worse from there.

I arrive, she tells me her team couldn’t see any signs of SI joint inflammation on my scan so they disbelieve my diagnosis. Problem is I’m transgender (assigned female at birth) they did not know this when studying my scan images, my mum only told the lady this after, purely because I know that the mri scans vary from biological point male and female. She tells us she has no idea how to read the images herself (bit worrying seeing as she’s a professional)

She now wants me off TNF meds entirely for months and then to endure another mri WHICH WILL NOT SHOW ANY DIFFERENTLY as my first mri pre medication didn’t show damage but did show the inflammation, my rheumatologist made diagnosis based on my blood work and symptoms and tried me with both oral rheum meds and steroid injection first. I KNOW how bad things are without TNF meds I KNOW how much better my pain was when I initially started and still I’d rather be on this than without because I’m not quite back to my worst but can feel it slipping.

I have no idea if he will accept me back as a patient again, if that would take months on a wait list as I was discharged but literally only months ago and I on,y have 3 months worth of my TNF medication left before I’m all out with no way to get more.

All wanted and needed was to try a new type of TNF.

What do I do? Is there even a way to fix this because if there isn’t I honestly 100% will just take my life, I can’t wait around and suffer anymore. I can’t wait ten plus years for her to realise she’s the one making a mistake once I’m fully wheelchair bound because of her error and say oh sorry about that.