After my last consultation, at the end of which, I was told that there was ‘nothing wrong with me’, I felt I had nowhere left to go.
After spending a couple of days feeling helpless and – I will admit, doing a fair bit of crying! – I decided to take matters in to my own hands and find my own doctor – one willing to acknowledge, at the very least, that there is something wrong with me, and at least try to work out what that something is.
I spent a headache- and nausea-filled Sunday afternoon writing out all my notes – every appointment, every possible diagnosis that has been mentioned and ruled out, every symptom… I researched the local neurologists, opthalmologists and ENT specialists and I posted my notes out to the first 10 on my list with a letter asking if they could offer any help.
The responses were mixed, ranging from the very lovely;
“Thank you for your letter. I am sorry that you are having such problems and that the cause/diagnosis is proving so elusive. I doubt if I can further your cause as the bulk of my clinical work relates to glaucoma which obviously is not the issue here. So as you can see I am of no help to you for which I can only apologise. Hoping that you make progress.”
to the (mostly) not-quite-so-helpful, including;
“I’m afraid I find it inappropriate to be asked for medical advice via mail. I would suggest that if your headaches are still an issue, the sensible thing to do is to visit your GP.”
(Gosh, I wish I’d thought of that!!)
As it happens, I have a close relative who has worked for many years in a hospital, and she suggested I approach one of the consultants that she has worked with and ask whether he might know someone who could help me.
His response was overwhelmingly nice. I haven’t been accustomed to such kindness! He reviewed my notes and spoke to a neurology consultant that he knows. I think I might have said “thank you” too many times!