Wednesday, 19 August 2009

If wishes were fishes

I was referred to a consultant physician and endocrinologist for a third opinion on some medical things. The appointment was unexpectedly awful, like being in the witness box for a dreadful crime. The crime of illness. He interrogated me with gems such as: "So you’ve done absolutely nothing for the last 12 years, is that what you’re telling me?" and ordered every test known to humankind. He was the epitome of rude skepticism, openly challenging everything I told him.

I returned home, disappointed to have used a precious trip out of the house on such an aggressive encounter, shed a tear under the doona, then pulled myself together and started organising the tests. It’s taken months and great expense to work through the list. I thought I already had the most tested bodily fluids in Australia, but apparently not.

He has since conferred with his learned colleagues at a posh hospital interstate (once my results started to come in he must've seen I wasn’t such an unreliable witness after all) and they collectively think I may have a rare condition with lots of syllables. As my GP joked, he’d never heard of that one before, but there’d be a support group for it in America, ha ha. No final results back yet, but surely I’m not the only person with an ME diagnosis who fervently wishes to find out they’ve got something else? Something more treatable? I don’t mind how hostile the physician is if he figures something useful out. My GP and I have our fingers and toes crossed.

I’ve looked this condition up and there is a medication for it. Hope springs eternal. I always suspect that around the next corner is a breakthrough, I’m incorrigibly optimistic. Along the way the cardiologist told me, among other tachycardic tidbits, that the secondary OI or POTS component of things is much worse than we realised, which in his opinion explains the ongoing symptom severity and extreme lack of functional ability.

Memo to my heart: settle down and stop acting like I’m swimming away from a shark. Let’s sway gently through the ocean grass fronds like a seahorse instead. It’ll be nice.

8 comments:

  1. There needs to be so much more good research on ME, not just to help the people who have it, but others who get misdiagnosed with it. Good luck!
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  2. I'm so sorry that you had to go through such a horrible interrogation.

    I'm hoping it will bring you hopeful news with effective treatment. I'm keeping my fingers and toes crossed for you.
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  3. Interesting...I too will have some digits crossed for you. Good luck!
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  4. Oh, do keep us updated. I had a doctor like that for a time. So difficult, but also rather useful.

    Here's another sick-chick blogger who recently got an unexpected, totally different diagnosis:

    http://acomiclifeindeed.wordpress.com/2009/07/17/that-new-diagnosis-announcement/
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  5. Thanks so much, Jennie.

    Cinderkeys, I totally agree with you about the research, it's one of my hobby horses!

    Rachel M and Amanda, thanks for the finger and toe crossing, you can take a break and uncross them now.

    Thank you for that great blog link, Priscilla - what an amazing story!
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  6. My daughter, Veronica became ill when she was 14 and I know very well how you were feeling when you wrote this post. Veronica,(somedaywewillsleep.com) was diagnosed with Ehlers Danlos syndrome when she was 20, which is commonly misdiagnosed as CFS. It has been a long journey and I empathise with you.
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  7. Hi Kim, thanks for stopping by and for your kind words. I'm sorry to hear about your daughter, 6 years without a diagnosis is a long time - especially at that tender age - but I'm so glad she got one in the end. I have heard of a couple of people being diagnosed with EDS after a previous CFS diagnosis. Interesting!
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