I posted elsewhere about this but think it's probably more appropriate here. I asked my GP for a referral to Professor Grahame yesterday. He's a lovely GP and very sympathetic, (I had to wait two weeks just for an appointment with him as he is so popular), but he is quite sceptical about my theory that all the pain I have been having is linked. He thinks that the Plantar Faciitis in my feet, the Baker's cyst in my knee, the tingling in my hands and arms, the pains in my hips, back, neck, shoulders etc are all coincidental. He also thinks that if you type in a list of symptoms into the internet you come up with dozens of diagnoses/syndromes. To be fair he has sent me for dozens of tests etc but so far, as we know, these tests often come back normal or at best show something minor which doesn't seem to explain the extent of the pain, or the sheer exhaustion that goes with it all. Unfortunately he cannot refer me to Prof Grahame without getting approval from the local PCT as he is out of our area, and it costs 1/3rd extra to refer into London. He is going to write to the PCT asking permission to refer me but suggested I also write a letter outlining why I felt I should get a referral, and explaining my symptoms, but to keep it to about 1 1/2 sides of A4, that was a massive challenge in itself! I was really proud of my letter yesterday and sent it off to him, but now I am worried I haven't explained everything clearly enough or put a good enough case forward. Has anyone else had to do this sort of thing to get permission from PCT for a referral?
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame