First mention of Wegener's yesterday: uncertain in Ohio

[annekat]

Welcome to the forum, and I'm glad you found us, especially if you end up having WG. Please ignore what you read about a WG patient being "a goner" if not treated within 5 months. This could be true in some severe cases, but then the person would probably be in the hospital and would get dx'ed. In many cases, people have been sick for two years or more before getting a dx, since WG so closely mimics recurrent sinus infections, allergies, asthma, etc. in many people. It sounds like you may be one of those, and if it just started in October, and you do have WG, you are catching it earlier than many. I don't know why the ENT you saw did not pursue some testing and did not do a nasal biopsy on the spot. I understand that your previous blood test looked good, but things can change quickly. Also, ANCA is not always a reliable indicator for a WG dx. As for the back pain, it's been my understanding that the kidneys are higher up, just under the ribs, rather than in the lower back, if the kidneys are your concern. In any case, it does sound like it could be WG, so as they say above, keep after them, and know that if you have WG you are in the best place for treatment; I'd try to see Dr. Villa Forte if I were you! Good luck and keep us posted.

[me2]

If you continue to have beauracratic problems don't hesitate to call the medical director and say "I was told I have possible Wegener's and now I can't get an appointment for a month and I am not getting calls back that were promised to me. Can you tell a patient they have possible Wegener's and then refuse to do a timely follow up?"

From Wikipedia (and my experience) - a medical director is a physician who provides guidance, leadership, oversight and quality assurance

[Psyborg]

You should contact Rheumatology. They are the main treaters of Wegeners. Yes you will be dealing with other doctors, but the Rheumatology department at CC is very good.