Yesterday I went to North Manchester Hospital to see the Consultant Rheumatologist to begin the process of diagnosing and treating my shoulder problem.
I must admit I was very apprehensive about this as there are long-term health implications dependent on the prognosis. The cause is almost certainly the direct result of the reactivation of my Ankylosing Spondylitis (AS) from the stress I suffered from the discrimination by my former employer though I was also expected to lift heavy reels of packaging above my shoulder height. There was a machine to do it but it only ever worked on one day whilst I was there and despite the fact that it was listed in the risk assessment as severe risk and everyone was supposed to use the machine, as I was the only one that complained I was ignored. I don’t have to explain why I was ignored.
So it’s a process of elimination. We have started with a Cortisone injection direct into my shoulder joint. I should see a result within a few days and I have to ring in with my observations after two weeks.
I had x-rays and blood tests and the results will be reviewed by my Consultant. I will get those in two weeks and I will then have a MRI scan if needed dependent on the results.
There is a distinct possibility that the trapping of tendons is caused by bony spurs that will have to be removed by keyhole surgery and if I need that it may have to wait until my major surgery and recovery is completed.
The big news was that I qualify for TNF inhibitor treatment!
Tumour necrosis factor (TNF) inhibitors are rationed by the NHS due to their expense but they have the ability to stop the progression of my AS. Phenylbutazone worked for me until it was withdrawn in 2002. That patients like myself that had no adverse reactions were not allowed to continue using the drug was a medical disgrace.
There are risks with TNF inhibitors the most serious that stops my immediate treatment being the adverse effects on immune system reaction particularly healing and blood clotting. My Consultant knows that I must complete and recover from my main surgery before we go down that route so we have booked a meeting six months from now to look to start the TNF treatment.
This is an amazing bonus I didn’t expect. I spent over 23 years suffering cyclic attacks from AS before diagnosis when it spread to my eyes as Iritis. Phenylbutazone together with a major exercise programme to strengthen my core muscle groups took me from being unable to bend and pick up a milk bottle to being able to ride a motorbike over the St Bernard Pass into Italy.
Whilst I can’t undo the skeletal damage I can reduce the effects and I’d happily swap ten years life expectancy with my AS in my current active worsening state for five years without the debilitating effects I live with every day. When I found out the risk of dying from the effects of Phenylbutazone were 1 in 100,000 I laughed as I’d have taken it even if the risk was 1 in 2 as it is all about quality of life. I admire in some ways disabled people who are able to just accept their fate but I’m not one of them.
I fought and beat AS from 1996 to 2002. I stayed in remission for approximately four years until it became active again due to stress at work. I’m really looking forward to doing battle again after my main surgery. My Consultant has no worries about me doing the physical exercise side so it’ll be money well spent by the NHS, as it will guarantee I work again even if it is just to demonstrate that you can fight and beat this disease.
I hope I’ve explained how much this news means to me. If I hadn’t moved to Manchester this would not be happening and I would not have such a positive view on my future life. I already owe this City so much and I will pay it back.
Manchester is about quality of life and all the people I encounter are doing the best they can despite the personal difficulties they face. It is inspiring compared to the indifference (at best) and negative attitudes of South Staffordshire.
Manchester is strength through diversity whereas Uttoxeter was misery through bigotry. I am now on the high road to salvation and I’ve finished my time in the valley of the shadow of death…
There’s lots of stuff on the net about cortisone, shoulder problems and Ankylosing Spondylitis here are three URLs if you are interested in the science behind it all: