Thursday, 12 March 2015

It's All In My Head

If you've been following this blog for a while, you know that one of my biggest frustrations is that my
Image - my brain SPECT scan
Pretty colours - not-so-pretty results.
brain just isn't functioning the way it used to do.

It's not just that I'm getting older.  I haven't just been forgetting the odd thing here and there.  I've been completely confused at times, and I've had the odd hallucination.  (Actually, all hallucinations are probably odd.)

The latest person to look at my mental failings is a gerontologist (a specialist who looks after old people).  She sent me for an MRI and a SPECT scan of my brain.

For those who haven't experienced either of these tests, I should explain what it's like.

For the MRI, the specialist double-checked when referring me that I wasn't too fat to fit in the machine (well, that really made me feel good about myself), and asked if I was claustrophobic.  Again, at the radiology place, I was asked several times if I was claustrophobic.

When I was finally in the machine, and wondering if I might end up tightly wedged in there and not be able to get out, I realised that it was entirely possible to become claustrophobic left in this tiny space.

I was lying on a very narrow gurney, which automatically drove itself into a tiny slot (like the eye of a needle) in a large white machine.  It made lots of thumps and grinding noises.  Imagine someone very enthusiastic but not very musical, practicing percussion for a heavy metal band. The challenge is to lie as still as possible, not freak out about whether or not it is possible to actually get out of the machine, hope there's still someone out there operating it, and survive the worst percussion performance in history.

The end result? My MRI was perfect.  No sign of anything whatsoever wrong. All good, except there were still no answers there.

Now for the SPECT scan.

This starts with a "resting" brain.  That means lying in a quiet dark room, but not being allowed to go to sleep.  Half-way through my time of darkness and silence, the nurse entered the room and injected a radioactive material into my arm.  (No, I didn't glow in the dark, or gain super powers.  Pretty disappointing, really.)

Then I had to lie down on a gurney, which threaded me head-first into another piece of techonology, which wasn't quite as loud as the MRI, but which, like the MRI seemed to take forever.  Actually, if you've ever had a regular CT scan, it's pretty much the same thing.  (I actually had a regular CT not all that long ago, but it didn't give any useful information, either.)

It was the SPECT scan that confirmed that actually, my symptoms have a cause.  I have restricted blood flow in my left temporal lobe. There really is something going on in my head, and it can actually be seen in a picture (for people who understand those kind of pictures.)

What does this mean for me? For my treatment from here?

I have no idea yet.  My GP called me in and gave me the test results.  I have to wait another two weeks to see the gerontologist to see what happens next.

Is this caused by my lupus? The GP thinks probably so, after all lupus can cause vascular problems (vasculitis) and lots of parts of the body.

What happens from here, I don't know.  After I've seen the specialist, I'll tell you what comes next.

How do I feel about it?

I'm ambivalent, really.  I'm glad to actually have a concrete explanation for my cognitive problems.  It's a relief to know there's something physically in my head - because there were times I wondered if maybe it was "all in my head" in another way. (Lupus is quite bad enough, I don't want any serious psychiatric problems as well.)  On the other hand, I'm also  bit anxious, because I don't yet know what this means.

Further reading:
CT Scan (Wikipaedia explanation)
Lupus Vasculitis (Lupus Foundation of America
MRI (Wikipaedia explanation)
SPECT Scan (Wikipaedia explanation)


  1. I feel a little bit like you do after reading : I'm glad they found something, but I wonder if it's bad or good. I'm waiting for the next step ! Claire

  2. Prayers for some good to come of this. I know the feeling, the sigh of relief you're not some crazy googling symptoms and making it up, but now the reality that there is something... Thank you Lupus for causing such a scene! Thank you for sharing, because all of us Lupies have questions for our symptoms and when something new occurs because of the disease. You're a strong woman!


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