Fear, Uncertainty, Doubt and Scanners

[davidgillon]

 
Well, fear might be over-egging the pudding, but my uncertainty and doubt levels have definitely taken a shift for the worse, when I was expecting them to head in entirely the opposite direction.

For all I'm fairly obviously disabled I've never had a particularly precise diagnosis to go with it. Facet joint damage covers some of it, chronic pain other bits and my hypermobile hips definitely fit in somewhere, though I don't have the small joint laxity that's more typical of HMS. I've been relatively happy to live with that situation, comfortable I knew how my disability would react in most circumstances even if I don't have a convenient label for it -- mostly I say HMS. Then I started having shoulder problems, which for someone who is dependent on crutches is a wee bit worrying.

Despite the issues starting in 2007, they weren't consistent and it took me until December last year to arrange an appointment to have it looked at, prompted by the addition of pins-and-needles to the existing, but intermittent, pain and muscle cramps. At worst I assumed I'd end up with a clearer idea of what was going on. Then the snow came down and the appointment was put back to March. Of course by the time March came around I had had no symptoms for months. The new consultant was a mixed bag, he didn't let me finish a sentence in the whole appointment, even though I was supposed to be telling him all about it, but did seem otherwise competent and did manage to prod (literally) the problems into revealing themselves. He agreed with me it's probably a c-spine problem , so sent me off for the full scanner 3-for-1 special of X-ray, MRI and full body bone scan.

Last week (after two cancellations, one me, one them) I finally got the results from him. After flashing a whole load of X-ray and MRI pics past faster than I could follow, he announced that they and the bone scan didn't show anything at c-spine level. 'But,' he added, just before referring me for physio and kicking me out the room, 'the bone scan does show problems with your left wrist, right hip and both knees'. Now I understand it wasn't intended to be a long appointment, but labelling something as a problem without any details whatsoever is just a tad less than satisfying!

If he was going to throw in unrelated problem areas then I was expecting lumbar spine, pelvis, left hip, left knee and/or right ankle (the things that add up to me being disabled); right hip is an intermittent problem, right knee I usually label as the only joint that's never been a problem and left wrist isn't much behind it. I fully understand that showing as a problem on a scan isn't necessarily the same as definitely being a problem, but the potential is there and I'm surprised at how much it's thrown me off my metaphorical stride. I'd thought I was well adjusted to my situation, including the shoulder issues,  but for someone reliant on crutches the potential of bilateral problems with shoulders, hips and knees, together with left wrist and right ankle isn't a reassuring one, yet that's what I'm left with for now. Fortunately the consultant does tend to write clearer reports to my GP, and copy me on them, so enlightenment may be coming my way by post  in a week or so, but I can't help wishing it had come last week instead! At worst I can pin down the physio for some answers, but that appointment may be weeks or months away.

The moral of the story is that 1) even competent doctors still don't always think through the implications for the patient of what they're saying, and b) be careful what you wish for, Murphy may see to it that you get the opposite....
 

Comments

[techiebabe.livejournal.com]

Don't forget that any HMS related stuff will probably not show up on x-rays, which has led to my being told over the years that my wrists are fine with lots of lovely well spaced out small bones, and that my knees look normal on x-ray so they have no idea why they are hurting me so much....

Guess which are my two most problematic joints?

Doh. Hope the report is useful, and not too worrying, when you get it.

[dwgism.livejournal.com]

Good points. I think I'm most startled that there apparently is bony damage in knees and hips (particularly the mostly symptomless right side), I thought it would be mostly soft-tissue. Wrist on top of shoulders is worrying given the long term crutch use.

Obviously I need to sit down with the physio when the appointment finally comes through and discuss the long term mobility implications. I just hope they let me get a word in edgeways, unlike the consultant!