Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Saturday, October 30, 2010
The hunt is on
Looking for a vasculitis or wegener's doctor. I've searched the Alberta docs and have found a couple of potential doctors who seem very very nice and interested in this nutty disease. I will follow up on Monday to see if they are taking any new patients. Cross your fingers for me, better yet, if you know of someone pass their info on to me. Gracias Amigos.
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Hi Marta, I'm sorry to say I've been busy and haven't been able to check in on your blog for a couple of days. When I read about your immediate response to the rise in pred-dose I was amazed over the similarities to my own experience, but at the same time I feel sad, because it seems really hard getting a clear message from the medical profession. Where are the guidelines?
ReplyDeleteI fully understand your frustration. It's impossible to know which road to take: Pred-effect (relief) versus insomnia, pred-rage etc... It feels like such a setback either way. I wish you best of luck in finding a supportive Wegener specialist. I'm convinced that your thorough search will pay off. You have to keep the faith and take one microstep at a time.
Stay United! Anna