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.