Well good for you! It doesn't feel like it, but you have done great work!...
You have got an appointment, and have great pictures - be sure to take those with you to your appointment!
I so understand your despair over these symptoms 'without a name'.
You are not alone in these years of 'Not yet Diagnosised'. - for the first 20 years of my symptoms there was the on-going debate of 'what diagnosis' - if any! (yes, including the dreaded, 'all in your head' dismissal)
This is such a burden of distress, a whole extra layer on top of your symptoms. Nothing is more gut wrenching, than condesending disregard for your struggles; especially from the person you thought was going to be your answer.
You are not alone!
Hopefully, this specialist will treat the patient, not the lab reports - someone who will jump into the puzzle of 'what do we have here?'
You have been so wise in pushing past this terrible experience. You have done so well in getting a new appointment. You need a partner in your journey through the tough days of hunting for that diagnosis: an advocate who will understand the great strain you have been carrying in this...
A doctor who will know that medical science, despite the amazing advances, still does not have an answer for everything! You need a supportive medical team to help you handle these life-altering symptoms, until a diagnosis is made.
Your pictures will help; 'testifying' to your symptoms - which can disappear just before an appointment!
You have exercised courage in forging ahead, despite the past.
When this new doc, starts to lay out the plan of attack, ask for recommendations for things to help you cope: such as physio?; some clinics have their own team of counselors to help you cope through this long process - this is vital. Perhaps there are some peer groups of others who are in this no- man's zone of 'waiting for a diagnosis' - or simply others who have similar symptoms - the struggle is real.
This does seem to be in the 'autoimmune camp'.. and the possibilities are endless. You need a medical team that will 'stay the course' as you uncover the possible diagnosis, while eliminating other labels.
It may help to take with you a concise written history, of your symptoms, medications, treatments tried; in this way you do not forget some important points.
Also, questions, which hopefully will be answered as your appointment unfolds.
I do pray you will get the support you need, as well as a clear plan of ' how will we proceed'.
Can someone reliable go with you as another set of ears, to help you remember all that is said? - or write down the instructions yourself.
When is the appointment?
Will you please let us know how you get on?
You are going in the right direction!
Press on!
All the best!