"My life is on hold"

I've been attending rheumatology for years. I was diagnosed with a rare condition in 2018 and still don't have a treatment plan. This rare condition means I am at high risk for blood clots. When I was diagnosed my case was taken over by the lead consultant of the clinic. This condition is usually secondary to an autoimmune or connective tissue disease but my consultant has only run standard blood tests and refuses to investigate further. Instead I was diagnosed with fibromyalgia, despite never been tested for that.

My rheumatologist keeps asking about a symptom that I've never had but they seem convinced I should. Doesn't take notes during our appointments. Has repeatedly told me that I am not eligible for treatment because I'm able to look after myself. 

In 2018 my consultant mentioned a specialist in my condition in England but since then refuses to tell me who this specialist is or how I can get referred to them. I've stated that I would pay privately to see a specialist but they have subsequently said they don't know who the specialist is or if there even is one because the condition is rare. 

I cannot work and live in pain every day and consistently have high levels of inflammation throughout my body. I dislocate several joints every year. While they have agreed in person that I likely had an overactive immune system attacking my body, it's been noted my condition is stable and I'd be reviewed in a year. I have multiple health conditions and attend other departments. My treatment in those departments has been stalled because my other consultants believe there is an overarching issue which needs to be addressed. I've exhausted every other option and all have pointed me back to rheumatology. 

In 2021 I asked for a second opinion and was told that there was no mechanism to do so as no one had ever requested one before with this consultant. It took several months and with help from the Patient Client Council, for the consultant to organise a MDM with other rheumatologists. I was only informed about the MDM after it had taken place and my rheumatologist presented my case to it. I had no confidence in my rheumatologist presenting the facts of my case since they have in the past consistently confused me with other patients. The result of the MDM was that there was no unifying diagnosis and I would be reviewed in a year. 

I have had to ask my GP to refer me to another trust just to get a second opinion as I've been told it is not possible to see anyone else in his department. This means I'm now once again at the bottom of a waiting list. 

I am a young woman and my life is on hold until I can be diagnosed. I have been told I cannot receive surgery for another condition until this rheumatological issue is diagnosed. I've also been told that the possible diagnoses could have an impact on fertility or pregnancy outcomes but nothing can be done while there is no definitive diagnosis. My entire life has become dependent on the 15 minutes I spent in one appointment. I don't know what to do anymore.