Quote Originally Posted by annekat View Post
Helen, it just really seems you need to get out of whatever medical system or network you are in and into another one. I can't imagine a worse ENT and you should be able to get a better one just about anywhere, whether listed on the VF site or not. If you live near a university teaching hospital or medical center, they are known for having good doctors who schedule appointments with outpatients and will have plenty of other doctors available in the other specialties that apply to your case, from which a "team" may be formed. I don't do this myself, just know people who do, and have heard the suggestion many times. I don't understand your not being able to use your expensive insurance to have better choices of whom to see. Do you need a new PCP who is more willing to make new referrals? I don't think it is necessary to already be diagnosed in order to see a rheumatologist with WG experience, who knows how to interpret your symptoms, read your blood tests, and can refer you to a good ENT, pulmonologist, or whatever you need. Your ENTs statement about the red or green crusts should be a huge red flag to anyone with WG knowledge. I would not even bother going to this guy again. And the inability to have access to your images is a travesty that I don't understand.

No, a nasal biopsy is not that big of a deal, mine was done right on the spot, unscheduled, in the doctor's chair, after I made my own appointment with the ENT I'd been seeing, prompted by the sudden appearance of my saddle nose, and having just been in the hospital overnight with new lung issues which suggested WG. He and his nurse stayed late to get the procedure done, a local and/or topical anesthetic was used, it was not without pain and there was bleeding, and I think there was a small cut made for a sample as well as scrapings from the hole in the bony part of my collapsed septum. People will say nasal biopsies are unreliable and inconclusive, but it got me a dx, and the discomfort and moderate amount of pain was well worth it. It sure can't hurt to try. I ended up being treated by my pulmonologist/internist, not a WG specialist but knew what the treatments were, and they worked. I never even had a rheumy until recently when my pulmy retired, and I got a new pulmy, too. Still see the old ENT occasionally, mainly for hearing issues and vertigo. So, though it is best to have a knowledgeable rheumy to oversee your care, not everyone does, if they have other good docs who are able to dx and willing to treat. Also, it's not unheard of for a very knowledgeable rheumy to go ahead and treat based on your symptoms and blood work alone. I don't understand docs who are so resistant to helping you get second opinions and a dx and treatment. Good luck. I hope others have some input here.

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Hi Helen, I take it you have not medically been diagnosed with WG? The way these people have treated you makes me so sad & worries for you. With your insurance do you need a referral? If you do not I would go to a different health care system (where I am we have SSM, BJC, Mercy, ect) & try that route. I would also call your insurance company and make a complaint about this ENT. They have nurses & other support staff that can help you. I hope all is well! My thoughts are with you!
Natty


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