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Saturday, 6 June 2015

A Diagnosis - Ankylosing Spondilitis

It's only taken 50 years!

I'm so upset & angry that it had to get to the point that I fianally couldn't stand the pain and incapacity any longer & had to pay to see a Rheumatologist privately. Dr  C works for the Royal Berks Hospital but also Spire Healthcare. I saw him twice last week. I've had two lots of X rays & two lots of bloods. I'm now waiting for a scan appointment.

His conclusion is that I have Ankolysing Spondilitis on top of everything else. He says I have had it since my 20's. The bones are fused plus the osteophytes, (bony outgrowths), have joined up because I wasn't diagnosed & treated much earlier. I can't understand why no one picked this up. I've had the symptoms & have been under 4 different surgeries in that time. You would think that someone would have joined up the dots - or sent me to someone who could.

Anyway, once he has all the results in he will decide on treatment & seems optimistic the pain & stiffness will improve. In the meantime I can take the max dose of Co Codamol, which my GP wouldn't let me take. I'm now off all of the different med's I had been given, which weren't working.

I have been in so much pain & had such disturbed sleep I've really struggled to function for a while now. I have just about managed to continue swimming & doing the aerobic exercises at the gym. (Dr C said definitely no weight lifting exercises at all & I've been trying to do them for months after referral by the GP!) I've also managed to do Chi Gong. To be honest that has all required massive will power. I am supposed to be doing exercises at home too, but there is only so much I can cope with at once!

I knew something had worsened drastically, but I am really shocked that this could all have been avoided - years ago. Dr C was quite open about the fact that GP's fail patients. They don't pick up on symptoms & they don't refer people to Rheumatologists. It's really not good & has blighted my life for years. I just have to accept that it is what it is & be glad that I was proactive & didn't just accept that the doctors knew what they were doing. They don't.

If I can get back to a relatively pain free & fatigue free life I will be hugely relieved, but the personal cost to me has been enormous.

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