Sarcoidosis

Hi,

i was diagnosed (but suspect I was dealing with for a while more) sarcoidosis back in Dec 2020.

It started off that breathing was hard at times and would have rather nasty pain in chest on left side.

I was in hospital for a few weeks where they did numerous scans and the likes. They also managed the pain with opioids medication and oxygen therapy for breathing (tho the consultant didn’t like that so he stopped it).

Since discharge though not a whole lot has been done. The condition has definitely gotten worse but my GP refuses to do much anything. 😅

I was there yesterday because the lymph nodes in my neck have swollen so bad it’s too painful to swallow or talk much as well as the chest pain being rather bad and also a stomach pain all of which seem to be connected to the illness.

i was referred to a surgery clinic (not sure for what reason they didn’t really explain) and any enquiries to pain remedies were basically ignored! Kinda just unsure if this is what I should expect then? Am I mad to be mad about this? 😅

Curious if there’s other folks who have problems like this and how their GP/Hospital look after it. For what it’s worth in two years since diagnosis I’ve been given no means to treat the illness either it’s symptoms or otherwise. I know steroid medicine is often used I’ve been prescribed it i wanna say max 3 times.

Basically I’m just left to my own devices which seems unreal to me with a disease like this?