Battling Ankylosing Spondylitis – heading into my biggest roller coaster dip

So this week, as the title implies I’m going to begin the story of the biggest low in the period of my disease. Which if you read my early blogs you’ll know means there must be something horrendous coming. It was a gradual slide though, so I’ll begin at the brow of the Roller Coaster slide. 

AS is very up and down anyway and I was probably at the bottom of a shallower dip when I went back to the hospital and asked for help again. As I said last week I went back because I discovered that the hospital had the ability to help when they had not done so previously. Not only had I asked to be referred back though I had also asked to see a different consultant than the one who’d seen me a few years before, to get a second opinion.   

Well when the appointment finally came through, hopeful and wound up, ready to do battle to get someone to take me seriously and help, having spent hours and hours through wakeful nights rehearsing what I would say and analysing my symptoms in a way that meant I could explain to someone who might then identify them and tell me what was wrong, I set off for the hospital.

Boy that was a long sentence (laugh). I’m getting all wound up even remembering it. Right take a breath and continue the story.

I remember going to see this new consultant, who from the way he spoke to me had quite obviously spoken to the other consultant who worked in the same clinic and who had diagnosed PERIOD PAIN, several years before, (the idiot). So anyway as he looked at me dubiously, as though I had no right to doubt the diagnosis of his colleague, I carefully and respectfully explained, pandering to a consultants high opinion of himself, that I thought, seeing as it was several years since I’d had any investigation and spoken to the hospital, and I was now in greater pain than before, I thought it was worth me coming along to see a consultant (another long sentence –it’s the emotion – laugh).

He of course could not just tell me to go away, so he suggested another MRI scan of my pelvis area.

So I went through the MRI scan ordeal again, lying still while the machine banged away, deafening me, lying on a hard mat, which then sets off the inflammation in my sacroiliac joints and makes it hard to work for a month or two.  And all the time I was in there I laid there praying, show something up, show something up, show something up.

It didn’t show something up. I felt like weeping, may be I did actually cry, I don’t remember, all I knew is when I got the results I was not going to be shifted from the chair in the Consultants room without some sort of help. So he suggested another test, a bone scan.

Have you had one of those? They inject this nuclear stuff into you, send you away for two hours while your bloodstream spreads it about your body, and if you have inflammation the bone absorbs it and it makes your bones glow. Cool, but heaven knows what it does to your innards. All I know is I was told not to pick up small children for a few hours (seriously).

My husband came with me for this scan because you can’t drive afterwards, and so I had the injection and then we hung about for a couple of hours, and all the time I’m on edge, hoping, hoping, hoping, hoping, that this time, now, this will work and something will reveal itself and I’d find out what was wrong and I’ll get some help.

When we went back in the room for the scan my husband was allowed to come in, and he sat beside me. I could see the screen showing my bone structure as the man who did the test was undertaking it stood beside me, talking to me. When he looked at my sacroiliac joints instead of being blue as they would be if they were healthy they were orange along the joining edges, and there were slight tints of orange on the edges of the two lower vertebrae in spine. His words which I recall as clear as day were, “You have inflammation there, see.”

I think I responded with an exclamation of relief, I know I felt an overwhelming emotion full of gladness and gratitude and yes, relief. Finally, finally I would be taken seriously, and his words were, “At least now you can be put on the right medication to help you.”

Oh what wonderful words. I did not imagine them, I heard them clear as day, my husband was there, he heard them too, they were said. So can you imagine my horror when I returned for the next consultant appointment, feeling expectant and hopeful and prepared for having that treasured diagnosis? Yes, there is really something wrong with you. Yes, we can help. Yes, this is what we will do. No. He didn’t say any of that, he opened by saying the bone scan showed nothing wrong.

I beg your pardon, the person who did it said…

No, there was nothing on the scan.

I wanted to shove him out the way get the scan up and look myself and tell him he was wrong, he had to be wrong, why had the person doing it said to me that he’d seen something and I’d seen it on the screen. Had I been dreaming? Had I? With the blissful words ‘At least now you can be put on the right medication to help you’ hovering in my head, I refused point-blank to just be sent away. I sat there in front of the consultant, angry, bitter, feeling thoroughly isolated and victimized, and said, “I am not going unless you offer me some help. I am in unbearable pain and I cannot continue without some form of help.  I know you have a pain clinic in the hospital and I want to be referred, and at least I want to have physiotherapy again.” (Oh hark at me! But it literally was like that, I was at the end of my tether, seething and I was not going to be fobbed off again.)

In my irrational anger I even wondered if the former consultant had written something on my hospital notes, saying – don’t help this woman. I simply didn’t understand how I could have been told something was showing as a problem on my scan and then two weeks later been told nothing was wrong when obviously, with amount of pain I was in, I knew something was wrong.

So anyway, he conceded, I got my referral back to physiotherapy and I got my referral to the pain clinic. I never saw any of those consultants again. Thank heavens for that, I have no faith in them.

The roller coaster keeps riding next week… 

 AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient). 

My debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).  Sapphire Star Publishing are the publisher. If you want to find out more got to  like me on Facebook or follow me on twitter @janelark


About janelark

a writer of compelling, passionate and emotionally charged fiction
This entry was posted in Ankylosing Spondylitis, Health and tagged , . Bookmark the permalink.

2 Responses to Battling Ankylosing Spondylitis – heading into my biggest roller coaster dip

  1. Hi Jane, love your blog. Was wondering if you have submitted your bio to the Faces of Ankylosing Spondylitis? You could get more exposure for your book. You can find it at

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