You're likely to start by seeing your primary care doctor. However, you may be referred to a specialist, most commonly a lung (pulmonary) specialist, an ear, nose and throat (ENT) specialist, or a kidney specialist (nephrologist). Unless your primary care doctor has some experience with Wegener's granulomatosis, it's unlikely that a diagnosis will be made until you're seen by a specialist.
Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to arrive well prepared. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet. This also may apply if you go in for a diagnostic test, such as a lung biopsy.
- If you've had any recent blood tests or chest X-rays at another office or hospital, ask the staff to forward the test results and any X-rays to the doctor you're about to see. Or, pick up the material yourself to be sure all the necessary information gets to your new doctor.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins or supplements that you're taking, or have recently been taking. Bring all of these medications with you to the doctor, in their original containers. Let your doctor know if you're allergic to any medications. Also, let your doctor know if any family members have recently been taking antibiotics.
- Get a referral, if necessary. Some insurance companies require referrals for visits to specialists. If you are being referred to a specialist, be sure a letter of referral has been sent to the doctor, or bring it with you.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help make the most of your time together. List your questions from most important to least important, in case time runs out. For the symptoms of Wegener's granulomatosis, some basic questions to ask include:
- What is likely causing my symptoms? What are other possible causes?
- What kinds of tests will I need? Do these tests require any special preparation?
- Is my condition temporary?
- What treatment do you recommend?
- What side effects can I expect from the treatment?
- Are there alternatives to the primary approach that you're suggesting?
- I have these other health conditions. How can I best manage these conditions together?
- Do I need to see a specialist? Will I need a referral?
- Will I need to take medications? If so, is there a generic alternative to the medicine you're prescribing?
- Are there any brochures or other printed materials that I can take with me? What websites do you recommend?
- Do you know if there are any support groups nearby?
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your doctor may ask:
- When did you first begin experiencing symptoms?
- Do you smoke?
- Have your symptoms been continuous or occasional?
- Have you taken your temperature? If yes, what was it?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
What you can do in the meantime
If your symptoms are getting worse, tell your primary care doctor so that he or she can try to get you to a specialist quickly.
Dec. 19, 2012
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- Papadakis MA, et al. Current Medical Diagnosis & Treatment 2013. 52nd ed. New York, N.Y.: The McGraw-Hill Companies; 2013. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=1. Accessed Oct. 12, 2012.
- Falk RJ, et al. Clinical manifestations and diagnosis of Wegener's granulomatosis and microscopic polyangiitis. http://www.uptodate.com/index. Accessed Sept. 21, 2012.
- FDA approves Rituxan to treat two rare disorders. U.S. Food and Drug Administration. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm251946.htm. Accessed Aug. 22, 2012.
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