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katwoman I hope you can get help soon.
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Kat, you definitely need a rheumy overseeing your care. Even an excellent ENT who sees lots of Wegs only treats ear, nose and throat. You need someone looking out for all of you and referring you out to various specialists as needed.
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So I phoned the Rheumies office this morning to ask to speak to him - receptionist tells me oh no you need to see GP, I am so cranky so I phone my GP office who tells me there is nothing available until the 29th Jan..this is utterly ridiculous and so I phone Rheumy office back and tell the receptionist that I want to speak to specialist as this is not satisfactory, she comes back and tells me Rheumy wants me to have chest x-ray.....
I just went and collected form for chest x-ray and ask the receptionist will Rheumy call me with results or should I call him, oh no she says you'll get a report wit the x-ray (omg I may as well treat myself) and then says oh or he'll call you.
This is the most inadequate care I have ever encountered in my entire life! I have just spoke with my boss who socializes with GP's etc and he is going to see if he can get some other recommendations
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I sure hope you can get it sorted out quickly. Getting a reliable, skilled team of docs is essential for your physical AND mental well-being!
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Katwoman, first I commend you on being persistant and on top of this. Sorry you have to go through the run around with the doctors! You certainly do not need this!
Last edited by elephant; 01-19-2010 at 12:03 AM.
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I concur with Sangye and Elephant Katwoman. Be persistant but nice.
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Originally Posted by
pberggren1
Be persistant but nice.
I always play nice, sometimes being a cat the claws can just come out on there own..lol!
Anyway, had chest x-ray - results should be in tomorrow, I'm sure it will all be fine but better safe then sorry as they say. Looking forward to what next steps will be with rheumy!
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yep need a new doc and one that deals with wg patients .. they tried that with my mom and her eyes until she went blind for a time thats when they gave her another dose of pregnazone . dont let it go to far!!!!
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results of xray were all good, no nodules and all was clear!
Cough still really horrible, but I feel ok!
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Vasculitis Foundation medical consultants provide advice by telephone or e-mail to physicians who treat patients with Vasculitis.
If you don’t have a Wegener’s doctor, please click the link and contact one or Sangye will be very upset! http://www.vasculitisfoundation.org/node/44
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