Even if this is not your first visit to your doctor, a lot of the information in this section should be helpful on future visits.
A general note: Scleroderma and other autoimmune diseases are chronic conditions, which means that you and your provider(s) will be in a working relationship for a long time. Because of this, it is very important that you feel that your provider is taking the time to listen to your questions and concerns and also is willing to hear your own ideas about how you would like to proceed with your health care decisions. The fact that you are reading this page (and the much more comprehensive Scleroderma FAQ) means that you have decided that you want to understand your (potential) disease and also to be involved in care decisions. If you feel that your doctor is not willing to listen to you, then you may want to consider switching to a different doctor.
Things to Bring
- A spouse, significant other, family member, or friend in good working order. What do I mean by “good working order?” Basically, you need a levelheaded advocate with you since you may be emotionally upset or shut down when you are first trying to deal with the diagnosis and/or prognosis of Scleroderma. Either reaction is entirely normal, and even healthy since it shows that you are not in denial that something serious might be wrong. The person that accompanies you on your doctor visits should be able to listen carefully to what the doctor is saying and take notes that you can review later. He or she also needs to know the questions that you wanted to ask your doctor to make sure that the questions are addressed. It is very common for normally assertive, talkative people to completely clam up during a doctor visit, so your advocate will be there to make sure that you get all the answers you need.
- A list of things to ask about. If this is your initial visit to your provider to discuss the Scleroderma symptoms that are concerning you, or if this is the first visit since your provider indicated that you might have Scleroderma (among other possibilities), you will have many questions. In addition to the questions that you already have on your personal list, here are a few additional topics to discuss with your doctor that you might not have thought about:
- Make sure every doctor has access to your medical records and lab test results.
As a lot of Scleroderma patients can attest to, the Scleroderma diagnostic journey can be a lengthy one involving many different doctors. For example, while most people start with a visit to a primary care provider (Family Medicine doctor, Internist, or Nurse Practitioner), the road to Scleroderma diagnosis frequently involves trips to specialists, for example, neurologists, gastroenterologists, rheumatologists, and others. If you are fortunate enough to belong to a large medical clinic or HMO, it is increasingly likely that all of your providers will have easy access to a centralized electronic medical record (EMR) system. This means that every provider can see all of your lab test results, X-rays, pulmonary function test results, and summaries of your doctor visits.
- If, however, you live in a smaller community or don’t belong to an HMO with a comprehensive range of specialists, then it is very likely that your PCP will end up referring you to specialists that are not directly associated with their medical practice, either during the Scleroderma diagnosis phase or for treatment. In these cases, these other physicians will typically NOT have easy access to your medical records. In theory, when your primary care doctor sends you to a neurologist for a consult, he or she will send over a copy of your relevant medical records and lab results (after you sign a release form). In practice, however, sometimes the records are not sent, or they are sent but the specialist won’t have ready access to these records when you come for your visit.
- The question you need to ask if you are referred to a specialist is: “will he or she have direct online access to my medical records and lab test results?” The physician may not directly know the answer to this in all cases, but her staff either will know or can easily find out. If there is any chance that you will ever be referred to another doctor that doesn’t have immediate online access to all of your medical records, then you need to become your own medical record system. For this reason, from your first doctor visit on, make sure you get a copy of all of the notes (which may include Scleroderma diagnosis or prognosis) from every visit and most important – keep track of all tests that your doctor orders and make sure you get copies of all of the lab test results, even if you may not be able to understand what some of the results mean.
- When you go to a specialist visit, bring all of these medical records with you in case the specialist doesn’t have them immediately available. Most of the time you will not need them, but the last thing you want to do is waste your time in a doctor visit because the doctor doesn’t know the results of your recent antibody profile and decides to order unnecessary tests because of this missing information.
- How many Scleroderma patients has your provider seen?
Scleroderma is a rare disease and the odds are good that a fairly young primary care doctor will have never seen a patient with Scleroderma (or if they did, they didn’t realize it). Even many rheumatologists will have little or no experience with Scleroderma patients. Typically rheumatologists see many patients with Rheumatoid Arthitis, Lupus, and other rheumatic diseases but because of the relative rarity of Scleroderma, most rheumatologists will have little experience in diagnosing and treating this complex family of diseases.
Of course, this often leads to difficulty in attaining a Scleroderma diagnosis, when in fact, the signs would be very clear to a doctor with experience on the subject. But just because your provider may not have dealt directly with a lot of Scleroderma patients does not at all mean that you need to find a new provider. In many cities, you will not be able to find a provider with a lot of experience with Scleroderma patients. What you are looking for is a provider that will be willing to listen and learn about you and if necessary, learn about Scleroderma so he or she can properly form a diagnosis and prognosis for your Scleroderma. The best provider is often the one that may answer some of your questions with “I don’t know, but let me find out and get back to you,” and then proceeds to do exactly that!
- For every Scleroderma test ordered, including lab tests, find out what the provider is trying to learn.
If this journey is truly to be a partnership with your provider(s), then you need to know what is going on, step by step.
Here we get to one of the tricky parts. One of the first tests that your primary care doctor is likely to order is an ANA test, which can be helpful in the diagnosis of Scleroderma. Having read the discussion above, you are now aware of the need for this test to be done either by just indirect immunofluorescence (IFA) or if it is done by Multiple of ELISA and the result is negative, then the ANA test will be re-run by IFA to confirm the negative result.
- If your provider indicates that he or she is ordering an ANA test (and the test definitely should be if the doctor suspects any possibility of an underlying autoimmune disease), then you need to ask him/her what method is being used to do the ANA test (that may cause a raised eyebrow at this point). In some cases, the doctor won’t know the answer to that question or will tell you it doesn’t matter since all of the ways of doing an ANA test are equally reliable. As was mentioned earlier, a false negative ANA result can potentially create major diagnostic problems if you are the patient that is incorrectly told that since your ANA result was negative you don’t have an autoimmune disease. If your ANA result is negative by anything other than IFA, you need to insist that it be confirmed by IFA.
- Since this type of interaction has the potential of resulting in a very awkward interaction with your doctor, I have included a one-page bullet point handout summarizing the relevant research, starting with the important fact that the American College of Rheumatology considers ANA testing by IFA to be the best method for doing initial ANA screening. It also includes brief summaries of some relevant research indicating the significant risk of false negative ANA results for Scleroderma patients when the ANA test is done by ELISA or Multiplex.
- (Note: Need to link the handout to the highlighted phrase in the above paragraph.)
Sometimes the best way to have this discussion with your doctor is to use the “I don’t really understand the details behind this recommendation from the American College of Rheumatology, but please humor me and go ahead and either order the ANA test done by IFA or alternatively agree to re-run it if it turns out to be negative when run by either of the other two methods. If it turns out that my ANA result is negative by both methods, then I will feel reassured that we need to look elsewhere for an explanation of my symptoms instead of an underlying autoimmune problem.”