Receiving a diagnosis of systemic sclerosis can be overwhelming, and understanding what to expect at your first rheumatologist appointment is crucial for managing this chronic autoimmune disease. This blog aims to provide guidance for newly diagnosed patients, shedding light on routine tests, discussions, and considerations that may arise during this initial visit. Remember, knowledge is empowering, and being well-prepared can help ease the anxiety associated with your first appointment. Often patients end up with this diagnosis after a long-failed road to other specialists that has been lengthy and are fatigued from retelling their story of their illness. Do not let this deter you from fully filling us in and do not be surprised if you get redirected to the symptoms we are focusing on.
Understanding Systemic Sclerosis:
Before delving into what to expect at your rheumatologist appointment, let's briefly revisit systemic sclerosis. This autoimmune condition primarily affects the skin and internal organs, causing fibrosis and inflammation. Early diagnosis and management are key to slowing disease progression and improving overall quality of life. Although your life will look differently than you pictured there is no reason to not live a beautiful and full life!
Preparing for Your Appointment:
1. Medical History:
Compile a detailed medical history, including any symptoms, previous diagnoses, medications, and family history of autoimmune diseases. This information will assist your rheumatologist in understanding your overall health. Also ask for a copy of your clinic notes and visit summaries. Knowledge is power and the more that you have at your finger tips the better informed you are. Remember that everyone’s journey with systemic sclerosis is very different and unique. What works for one person may not be right for you.
2. Symptom Journal:
Keep a symptom journal leading up to your appointment. Note the frequency and intensity of symptoms such as skin tightening, joint pain, and fatigue. This can aid in more accurate diagnosis and treatment planning.
3. Questions:
Write down any questions or concerns you have about your symptoms, the diagnosis, or the treatment plan. Being prepared with questions ensures that you leave the appointment with a clear understanding of your condition. Also it is a great idea to bring a trusted family member, partner or friend as an extra set of ears. Often people only hear a portion of the information that they are given. Plus if you are stuck in a waiting room because we are behind 😉, at least you have a partner in crime to pass the time!
What to Expect During Your Appointment:
Comprehensive Physical Examination:
Your rheumatologist will conduct a thorough physical examination, paying close attention to skin changes, joint mobility, and any signs of internal organ involvement. We often will do a RODNAN skis score, to know where your skin tightness is and how it may progress over time.
2. Diagnostic Tests:
Routine blood tests are often ordered to assess inflammation markers, antibodies, and organ function. Additionally, imaging studies such as X-rays or ultrasounds may be recommended. At a minimum we like to have a yearly ECG, Echocardiogram, Pulmonary Function Test as well as we may do a baseline CT of your chest.
3. Discussion of Symptoms and Impact on Daily Life:
Be prepared to discuss the specific symptoms you're experiencing and how they affect your daily life. This information is vital for tailoring a treatment plan that addresses your unique needs. Please if you like to do your own research ensure that you ask us for reliable websites that will give you good balanced information about your disease. Dr. Google can be a scary and we like to provide excellent online resources so to prevent you finding unreliable resources.
4. Treatment Options and Management Plan:
Your rheumatologist will discuss potential treatment options based on your diagnosis. This may include medications to
manage symptoms, physical therapy, and lifestyle modifications. Please keep in mind that your disease is truly unique and there is no one-size-fits-all approach. As you will come to know in the coming months and years, everyone’s path with systemic sclerosis is their own exclusive road map. Also depending on where you live you may have access to certain medications like Sildenafil or Tadalafil that are approved on the public formulary and this differs from province to province.
5. Educational Resources:
Your rheumatologist should provide educational resources or direct you to reputable sources to learn more about systemic sclerosis. Understanding your condition empowers you to actively participate in your care.
Receiving a systemic sclerosis diagnosis is a significant moment, one that you will often relive, do know that you will have support! Your rheumatologist is there to guide you through the complexities of the disease and work with you to develop a personalized treatment plan. By actively participating in your care and staying informed, you can take control of your health and work towards a better future with systemic sclerosis. You will have a full life with ebbs and flows, but it will be a memorable one that is filled with wonderous moments.
Steph’s bio:
Over the last 15 years, I have dedicated my career to serving as a clinical medical assistant at McMaster University's Department of Medicine. Recently, I assumed the role of National Coordinator for the Canadian Scleroderma Research Group (CSRG), adding a new dimension to my professional journey. In this dynamic position, I have embraced additional responsibilities, including the management of social media accounts and the coordination of patient education events in collaboration with CSRG and Dr. Larché. This opportunity has invigorated my passion for contributing to the advancement of scleroderma research and forging connections with patients on a broader scale.
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