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Dealing with Doctors

How to Deal with Doctors – Getting a proper diagnosis

For people with Vasculitis diseases, getting a proper diagnosis can be one of the most difficult challenges they face. The majority of those eventually diagnosed with a Vasculitis disease had significant problems in getting a correct diagnosis. Many were incorrectly diagnosed at the beginning with a variety of conditions that have no specific blood test to confirm the diagnosis. Many were told that their symptoms were in their heads or that they were under too much stress.

Here we would like to provide you with some ways of working with your health care professional to help get you the best treatment and a proper diagnosis. Please note that these are only suggestions and that there may be many other useful ways in communicating effectively with you physician. The main purpose of this section is for you to play an open and effective part in helping your health care team work with you to manage your illness. As always please consult with your physician before beginning any kind of treatment plan.

  1. Do your own family medical history. Take an inventory of your family’s health problems, expanding your research beyond your immediate family to cousins, aunts, uncles, and other relatives. Since current research points to a genetic component in some vascular diseases, you should know the health histories of your first degree relatives, including grandparents and cousins, if possible. Once you know your family history, you can communicate it effectively to your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.
  2. Keep a “Symptoms” list. People with Vasculitis often suffer from a number of symptoms that, on the surface, seem unrelated. In addition, they may have suffered from other seemingly unrelated symptoms throughout their lives. It’s important, therefore, to make a list of every major symptom you’ve experienced so that you can present it clearly to your doctor. List the symptoms in the order of concern to you. When the nurse calls you into the exam room, review your list–or, better yet (in most cases), give the list to the nurse to record in your chart. When you see your doctor, be sure to mention at the very start of your visit the symptom that bothers you the most. This is often the problem to which your doctor will pay the most attention. Unless your problem list is lengthy, or the doctor notes a serious problem which takes higher priority, she/he usually will be able to answer all your questions. Know in advance what questions are truly important to you. In this way, you will not spend a lot of time discussing things that confuse the issue of your current needs.
  3. Seek referrals to good physicians. Talk to your family and friends. If you’re having trouble getting a proper diagnosis, see whether someone you know and trust can recommend an internist in your community who is also a good diagnostician. It’s always good to ask around. Check your community resources–attend health agency meetings and community health meetings sponsored by local hospitals, and talk with the health care professionals at those meetings and elsewhere. One thought is to identify the medical specialist that deals with your major symptom and then check with a major medical center for a referral to that specialty department. A number of agencies dealing specifically with Vasculitis diseases maintain referral lists.
  4. Inquire about the physician’s and hospital’s experience with Vasculitis disease. All patients want to receive the highest quality treatment, but it is difficult to evaluate physicians and hospitals to which they entrust their care. It’s a good idea to ask the physician whether he or she takes care of patients with the specific disease that has been diagnosed. Generally speaking, the larger number of patients with a particular disease treated by the physician, the better. Also, a specialist should be adept at managing the therapies used to treat a particular vascular disease.
  5. Obtain a thorough clinical examination. Tests vary for different vascular diseases, and no single test can ascertain whether a patient has a Vasculitis disease. When facing test situations, a patient might ask: What is the purpose of this test? Are there any alternatives? Is this an outpatient or inpatient procedure? Can I anticipate any pain, discomfort, or claustrophobia; and if so, can I take medication to make me more comfortable? Is there a cost involved, or if it is covered by my health insurance? Who will get the test results, and what will they tell me about my condition? The patient needs to understand that, although diagnostic criteria define a disease, they are sometimes uncertain. Making a Vasculitis diagnosis is an exercise in the art of medicine as well as the science.
  6. Get a second, third, fourth opinion if necessary. Sort out your options for treatment at the beginning before symptoms worsen. Since Vasculitis has just begun to be recognized the symptoms can be vague and not visibly apparent, many doctors don’t think to test for rare diseases initially. If a doctor doesn’t take your symptoms seriously, dismisses them as stress related (when you do not feel as though you are under any excess stress), or refers you to a psychologist, find another doctor. You know you’re not feeling well, so don’t be intimidated. When trying to get a correct diagnosis, it’s important to be assertive.
  7. Partner with your physicians to manage your disease. Once your have settled on your treatment plan, keep in mind that your health is best managed through a partnership–you and your medical team. Don’t be afraid to ask questions: What are the treatment options? What are the advantages and disadvantages of each? How long will the treatment last? Establish a dialogue, a give-and-take on a mutual respect basis.
  8. Keep pictures and journal along with your symptom list.  Write down the foods you eat or what you may drink in a day. Some of these things may trigger a flare. Also keep note of the weather as this can play a roll on how our body reacts. Please note if there has been any additional stressor in your life. These do not cause the illness but can make symptoms worse. If you have any visible signs of disease such as rashes, swollen limbs, eye problem or anything else that can be noticed. Please have someone or yourself take a good ‘close-up’ picture of it so you can have it to bring to your next doctors appointment. By the time you get there that symptom will most likely be gone and the doctor will want to see for themselves what you are talking about.
  9. Learn to deal early on with the long-term effect of a chronic disease. The complicated process of obtaining a diagnosis and developing an appropriate plan of treatment may mean that you will be subjected to a great deal of uncertainty. Accept that patients with Vasculitis and their families very likely will need to adapt to a somewhat different life style. Some people are using the Internet as a way to communicate their symptoms with others. Doing so can help advance your own personal research, may provide clues to what disease you are experiencing, and can be a means of uncovering good resources for finding a good diagnostician. Sharing your situation with others can have enormous benefit, including eliciting the kind of emotional support that is so necessary for people with undiagnosed diseases. If you don’t have your own computer, many libraries provide access to the Internet through their computers. Ask your librarian whether this is available to you, and don’t hesitate to ask for help if getting “on-line” isn’t clear to you. Also, contact your hospital community education department, a nurse at the health department, or a non-profit disease-specific organization to find out about support groups.