Whenever I'm introduced to a new doctor or present doctors with new, odd symptoms, my mum likes to tell them "she's going to give you a run for your money." That's completely accurate. Most times, doctors can't figure out what's wrong with me- at least, not for the first two visits. I think the only time I ever got a diagnosis in one doctors appointment was for a classic case of bronchitis (that I walked around with for a month or so because I just didn't want to see another doctor). And I know I'm not alone in that either.
Lots of people I know walk around for years not knowing what's wrong with them. I went about a decade. I know a lot of GPs are not able or don't know how to properly treat many autoimmune and other chronic illnesses, but I can't understand why patients aren't refered to specialists faster. It's cruel to make someone suffer and ignore it. I also hate when specialists dismiss patients quickly. Maybe it's not a clear cut diagnosis or the worst disease or damage they've ever seen, but it is for that person. And doctors don't get that.
We are often called pushy patients- even seen as drug addicts because we have to push to get adequate pain management. But do they realise what would happen if we didn't push? We wouldn't be helped. We would often suffer. They don't understand that often we've been pushed away, so we learn to fight. And not just for some pills or time. We fight for our lives.
You are an individual with the right to proper medical treatment. It might not be easy, but make sure you get proper care. Push for it. Insist on it. Do what you need to. No one has the right to make you suffer through something that can be helped. Fight for your rights. Fight for your life.