"Rheumatology appointment"

Not so much as a review but a cry for help as I just don't know where to turn to next. My GP referred me to Neurology at the RVI in December 15 and I waited 18 weeks until 6 May 16 for my first appointment. Apart from two CT scans and bloods my next appointment was not scheduled until 18 Nov 16 a further wait of 28 weeks. I was told at this appointment that the probable diagnosis is a rare condition called Relapsing Polychondritis and The RVI would refer me directly to a Rheumatologist. In the mean time I should google the condition which would help me to put all my varying symptoms into some sort of order particularly as they thought that I also have Lupus and Sjorgrens Syndrome.

I have now received a Rheumatology appointment without a named consultant for 27 June at 9am which is now another 30 week wait. My initial symptoms started on 27th Jan 15 resulting in a trip to A&E and here 2 years later and 76 weeks in the hospital system I have still not received an affirmative diagnosis or medication to elevate any of the symptoms. My fear is that my health is going down hill and as the condition can result in extreme pain, blindness, deafness and loss of mobility I am asking for help to get an earlier appointment particularly with a named consultant who knows about this rare condition.

Thank you so much in advance for anything you can do to help.