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Scleroderma:
Test after Test, Doctor after Doctor

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Rebecca OUP-US

Scleroderma is a rare chronic disease that manifests in many parts of the body making treatment particuarly difficult. Below, Maureen D. Mayes, M.D., author of The Scleroderma Book: A Guide For Patients and Families advises patients on how to navigate towards health while coordinating so many doctors. June is National Scleroderma Awareness Month, to get involved visit the foundation’s website.

My patients frequently express their frustration about having all these tests, each ordered, performed, and interpreted by a different doctor. They are confused as to the meaning of the results, and they worry that there is poor communication among their many physicians. Each doctor is prescribing something for one part of the body and seems to be uninterested in or, worse, less than knowledgeable about the process of scleroderma as a whole.

I wish I could offer an easy solution to the problem. The fact is that modern medicine is scleroderma.jpgso complex that it is no longer possible for one physician to perform and interpret all the different tests (cardiac catheterization, stress test, endoscopy, bronchoscopy, and others) and to know all the latest treatments for all the systems of the body. This is both good news and bad news. The good news is that today we can diagnose and treat hundreds of different conditions that could not be diagnosed accurately or treated effectively even a decade ago. The bad news is that you have to go to multiple doctors, undergo multiple tests, (some “uncomfortable,” which is the medical lingo for “painful”), and be confused by multiple and sometimes seemingly contradictory descriptions of what is wrong.

It is at this point that multiple doctors come into the picture and you, the patient, have to become actively involved in your care. The key issue is coordination of care and sharing of information. Medicine has become so complex that it is no longer possible for one doctor to provide all the services that are required by people with diseases that can affect multiple organs in various ways. Here is an opportunity to play an active role in your care and most doctors (and doctors offices) will appreciate the contribution.

Tip number 1: Get copies of your own records and keep these in a file. It doesn’t matter if you don’t understand the terminology. You can read them if you like, but your role is really that of an executive secretary. Do not rely on your doctor’s office to send a copy. They say they will, and I am sure they mean it, but too many times the records are not sent, arrive too late, or are incomplete. Bring a copy with you, and do not give your copy to the rheumatologist. Have the clerk make a copy on the spot and give you back the originals.

Tip number 2: Have the nurse put your records in your chart before the doctor sees you. It is time saving for the physician to have the laboratory tests from a previous workup on the same day that he or she does the history and physical. I can often finalize my diagnosis and offer a plan of treatment if I have this information available on the same day I first see a patient. (Some people want a second opinion “fresh,” that is, they do not want to bias the doctor based on previous opinions. That is okay, but be candid with your doctor about this. Even if you wish to do this, include copies of test results.

Tip number 3: Identify the “quarterback.” This is the doctor who is going to coordinate your care. This may be your general practitioner, your general internist, your rheumatologist, or another subspecialist. You have to be clear in your own mind, and it has to be made clear to your doctor, who is playing that role. For my scleroderma patients who need test from other specialists, and who will likely get treatment based on the results of those tests, I want to be the one calling the shots.

When I send a patient to a pulmonologist (lung specialist) or other specialist, I want that doctor to do the evaluation and get back to me with the results before starting treatment. Usually when I refer a patient to them, I indicate that this is the arrangement. This is important to ensure that a medication from one doctor will not conflict with another or that a test recently done by one specialist will not be repeated by another.

Tip number 4: Make sure all your subspecialists have all the other doctors’ reports. The best way to do this is to request a copy of each specialist’s report to be sent to you directly. It is okay to do this, and people do it all the time. You are not meddling or being nosy. There is nothing secret in the reports. If you are afraid that there will be something in the report that will frighten you, don’t read it. If you do read it and get alarmed, talk to your doctor about it. You can also ask the specialist to send a copy of the report to all your doctors. It does not involve much extra work on the doctor’s part (the same letter gets sent), and the only added expense is the mailing cost. It is very helpful for you to have a typed list of the names and addresses of all your doctors, or a business card from all the doctors who are to get reports. Pick up a couple of extra cards when you go to a new doctor. In any event, make sure you get a copy of the report for your personal file. You may be referred to some new specialist in the future, and your having your own copies would be helpful. Keep in mind that your body systems are interrelated. The results of the lung workup will be relevant to the heart doctor and the GI doctor. Sometimes they may only glance at them for a second and put them down again. Sometimes all they need to see is the bottom of the reports, Where it says “normal.” It does not take much time to read this, but the information is extremely valuable.

Tip number 5: It is not necessary in most situations to have the specialist call your primary doctor. This kind of communication is usually done by letter, which is dictated on the same day that you are seen. The problem is not with making a phone call; the problem is with playing phone tag for days in a row.

Tip number 6: You, your primary-care doctor, and your rheumatologist are going to have a long-term relationship. Figure out who in the office is the person who handles referrals and is the one who can get the doctor’s attention. This may be the office manager, the receptionist, or the nurse. Before you run into problems, find out when the best time is to call and whn the doctor is likely to call back. Some doctors make return calls at lunch of in the evening. If you are having a problem, call as early in the day as possible so that you can get on the list of people to call back.

Recent Comments

  1. Dr Nahida Zafrin

    I want the whole book

  2. Dave

    I need help. I don’t know what type of skin disease I have now. I search the internet about the scleroderma and looks at the images it seems that some of the images from the internet and the skin disease I have right now are the same. I’m not sure if this is really a scleroderma. I am very worried now. Can someone who can help me.You can email me and I will send you the pictures of my both legs.
    Thank you very much….

  3. Georgia

    I have seen my scleroderma doctor twice. My scl 70 ab test was 6.3. I know that the scl 70 ab test is for diffuse scleroderma. Because I have every single symptom of CREST, my doctor says that I have limited scleroderma. I do not think that his diagnosis is correct as the test for limited was low. Can you explain the test?

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