How to explain pain part two….

I know, I know, I post only twice last week and you end up with two in one morning. I just wanted to update you on how the phone call went with my GP.

There was no begging or pleading I just said I can’t do this anymore and I need morphine. He just said “OK”. There was no argument or trying to persuade me out of it. He was just very matter of fact and said no problem. I have been prescribed slow release morphine to be taken every 12 hours. He is starting me on a low dose as it can produce nausea. Ive never been nauseous with morphine but I appreciate his caution. He said he didn’t want me being sick as a dog and then being put off by it and not taking it.

He also decided to read out a letter he had received from my old neurologist Dr X.  Dr X had obviously received a bit of a shitty letter from the rheumatologist I saw privately in May 2011. In his letter Dr X acknowledges that I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehler-Danlos Syndrome type 3. That must have killed him after saying that there was nothing wrong with me 12 months ago! He then goes on to say that I have been extensively tested for Myasthenia Gravis and there is no clinical evidence to back this diagnosis. In this respect he feels there is no point me being referred to his clinic. In lay mans terms he is refusing to see me, despite the fact I have something neurological going on. At this point both my GP and I dissolved into a fit of the giggles!

I was very calm and said “It must be very embarrassing for him to admit there is something actually wrong with me as 12 months ago it was all in my head”. This was greeted with more giggles from my GP so I added “sorry that’s not very fair of me to say that to you as you can’t comment.” At this point my GP cleared his throat and said “Yes, moving swiftly on”.

Its nice to finally have a GP that believes me and is willing to learn about rare conditions. It didn’t happen at the last GP practice I was at. They still believed in if you hear hoof beats its a horse not a Zebra. My GP takes the stance yep it could be  a horse but it could also be a Zebra. He doesn’t hold with “That condition is too rare” as an excuse not to test for it. Just because its rare doesn’t mean that no one has it, its just means very few people have it.

I’m still pissed off with my GP due to him forcing me to have a private referral to the rhuematologist. His logic at the time made no sense to me and still doesn’t. I understood today that he is actually against private referrals due to his political beliefs. I explained to him that I too hold those beliefs however when it is your health you are fighting for sometimes you have to compromise your principles. I certainly would still be without a diagnosis of Ehler-Danlos Syndrome if I hadn’t been prepared to compromise.

So I just need to find my previous letters from various neurologists and copy them for my GP and then he will refer me to another neurologist at the local hospital.

Is it weird that Dr X’s refusal has made me laugh?

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