Wednesday, August 3, 2011

Chinese whispers

I'm taking part in a drug trial currently. It's looking at whether the addition of some compound or other to Detrusitol will reduce the side effect of dry mouth. I've had to take Detrusitol for 6 weeks to see if I get the dry mouth - I do, oh boy do I! When I first got the symptoms of optic neuritis I wondered if it was a side effect of the Detrusitol - if it dries your mouth out, surely it might dry your eyes out too.  Seems it wasn't to blame.

Today I went in to be randomized for the next step - blind testing where you have 4 weeks on Detrusitol, 4 weeks on placebo and 4 weeks on the new drug. When I was hospitalized I contacted them to let them know so today was also a bit of a follow up to that. I'm now getting used to the looks on people's faces when you say I have optic neuritis and lesions on my MRI. I often want to slap them because you know they're thinking "MS!" but of course don't want to say it. For goodness sake I'm a health professional with an iPhone!

They asked if I'd brought in my discharge letter - I laughed! What discharge letter! It was 'goodbye and thanks for all the fish!". All I could do was relay that when I asked about the MRI I was a told there were plaques. "Plaques are lesions, right?" I had to tell the I had no idea when I'd have an appointment with the neurology team.  Now things could have ground to a halt there but no! The doc rings radiology and asks what my MRI showed - multiple lesions.  He then tried to get hold of a neurologist but no one was answering his calls. So he gave me a diagnosis of probable MS but of course can't confirm and we decided there is no reason to not continue the trial since it won't exacerbate 'my MS' - hits home when it's described as something belonging to you!
Not my MRI, just an example!

He also thinks it'll probably be 10-12 weeks before I get an appointment so the study will be done and dusted by then anyway.  Of course if I go private then I'll put a spanner in the works but we'll see. So I've got a differential diagnosis based on Chinese whispers! Oh how I love the health system! I'm really over it! Just another area that is on my list to fix when I rule the world.

1 comment:

Andrew said...

Yep, I really think you should change the reaction buttons at the bottom of your post to include "hell!"

Truly remarkable that they don't try just a little harder with someone who is a health professional. AND with something that is potentially very serious.