If it's any consolation OP, I developed symptoms 7 years ago and I am no further forward towards getting a diagnosis despite my symptoms getting considerably worse. It took years to get a GP to take me seriously in the first place, and now it's just waiting list after waiting list.
I was discharged from the rheumy without ever being told, after one triage appointment with a physio. I waited well over a year for that appointment, and the OT told me I will definitely need to be seen there again. I rang them nearly a year later to see what was going on and they then informed me I had been discharged and if I wanted to go back, I'd have to go back on the waiting list. I'm going to be honest here and say I cried during that phone call.
I'm waiting several months now on an MRI and a neurologist appointment. I'd be lucky to get either in the next year.
I was referred to the ENT as I've had a problem with my nose since I was a child. It wasn't massively serious but I do have a nasal drip and get frequent enough infections, which can cause a lot of pain. I went in with the full awareness that they were limited in what they could do, but the reason my GP referred me there in the first place was because my mental and physical health at the time were locked in a downwards spiral with each other and if one small thing could be fixed, it might break that spiral. Again, it took over a year to get an appointment, and there were nearly a year between appointments. My 3rd appointment, I left utterly humiliated and furious as the doctor told me I just didn't know what a cold was, and accused me of being a hypochondriac. Now, I'm the type of person who works in a high risk environment, that doesn't tolerate softness. I've broken bones and continued on with my day so a hypochondriac I am definitely not.
I waiting again over a year for a dietitian appointment through the HSE for IBS, with the intent of starting a low FODMAP diet. I finally got one at the start of this year. I was told to eat more fibre and we would review in a month. A month came and went, and no sign. About 6/7 months later, I finally got a second appointment via phone, and was told I was eating too much fibre (despite eating what they told me to) and to cut back, and also cut out onion and garlic. Also, that dietitian told me during that appointment that they didn't actually do FODMAP diets. They told me they would ring me back in 6 weeks, and refer me onto another dietitian who did specialise in FODMAP diets if their new suggestion didn't work. Well, it has been 5 months since then and still no 3rd appointment, and I have no way of contacting them as the phone line used before isn't answered.
So yeah, I'm in my mid 20s and I can barely move some days. There have been morning where I had to slowly drag myself up the hallway because I couldn't stand. My hands don't function properly, my hips are starting to go, I am seriously fatigued most days, my memory and cognitive function are declining terrifyingly. I used to do sport 5 evenings a week and now some days just getting to the bathroom is a chore. I used to be considered gifted, and was in advanced adult creative writing courses as a young teen, and now I have days where sentence structure doesn't exist, I forget what I'm saying half way through saying it, and I make a ridiculous amount of typos. Some days I could be looking right at the thing I'm searching for and it wouldn't register in my brain that I'm seeing it.
Yet, because of the incompetence of the HSE and GPs before them in so many ways, I am left undiagnosed and untreated. Whilst I understand they're swamped busy even during normal times, there have been several cases where it has just been obviously oversights and lack of care that has been dragging this entire experience out. I don't know when I'll ever get answers, or if I'll ever gets answers. I just have to hope whatever it is isn't terminal or causing too much of a reduced life expectancy.