Introduction
Have you been diagnosed with lupus and you are now feeling overloaded with confusing and concerning information? What kind of doctor do you need? Will you need more than one doctor? How will you know what kind of doctor to see for which symptoms? Your primary care physician should help guide you through this process but we wanted to write this blog to act as a sort of ‘doctor dictionary’ to help clarify some of the questions about physicians that you may have.
The form of lupus and it’s presenting symptoms will determine what types of doctors you may need to see. The primary care doctor for most lupus patients is a rheumatologist (ROOM-uh-TALL-uh-jist), a physician who specializes in diseases of arthritis and other diseases of the joints, muscles and bones as well as certain autoimmune diseases including lupus and rheumatoid arthritis. It is common that lupus patients will also experience overlap diseases, such as scleroderma, Sjogren’s Syndrome, Raynaud’s, mixed connective tissue disease (MCTD), to name a few. These conditions will also require specialists to help manage the symptoms.
For ease of identifying some of the physician specialists that you may need, they are listed below by specialty.
Dermatologist: A dermatologist is a doctor who specializes in diseases of the skin. These doctors typically diagnose and treat conditions of the hair, skin, nails, and mucous membranes (inside the nose, mouth, and eyelids).
Lupus Butterfly Rash/Cutaneous Lupus
Some of the conditions (related to lupus) that a dermatologist might treat are:
Cutaneous lupus
Discoid lupus
Eczema
Psoriasis
Hair loss or Alopecia
Psoriatic Arthritis
Dry skin
Scleroderma
Find a dermatologist near you here: https://www.aad.org/dermatology-a-to-z/about-dermatology/what-is-a-dermatologist.
Cardiologists: These doctors have special training in finding, treating, and preventing diseases of the heart and blood vessels.
If your general practitioner or family doctor feels that you might have a heart related condition he/she will often refer you to a cardiologist, or you may wish to visit one if you chronically experience any of the following:
Shortness of breath
Dizziness
Chest pains
Feeling light headed
The cardiologist will review your medical history and perform a physical examination which may include checking blood pressure, height and weight, etc. If further testing is needed, ECG (electrocardiogram), x-rays, or blood tests may be ordered.
*For acute/urgent symptoms similar those listed above, please seek immediate medical attention.
Clinical immunologists: These are doctors who treat immune system disorders.
Immunology is a relatively new specialty that involves providing clinical and laboratory services for patients who have the following conditions:
Immunodeficiency
Autoimmune diseases
Allergies
Systemic vasculitis
Endocrinologists: Doctors who treat problems related to the glands and hormones.
Endocrinologists are specially trained physicians who diagnose diseases related to the glands. Glands in the body release hormones. Therefore these physicians treat patients who may suffer from hormonal imbalances. Some common conditions that endocrinologists treat are:
Diabetes
Hypertension
Metabolic disorders
Lack of growth
Osteoporosis
Thyroid diseases
Cancers of the endocrine glands
Issues with the over or under production of hormones
Cholesterol disorders
Infertility
Family doctor (also called a primary care physician): Family or primary care physicians are dedicated to treating the whole person.
These types of physicians are trained treat each organ, every disease, all ages and genders. The main idea behind family medicine is to have a personal, ongoing, patient-physician relationship focused on integrated medical care. Your family physician may refer you out to specialists as needed, but will maintain a holistic vision and be an integral part of coordinating your overall care. Having a good primary care physician can make all the difference in feeling heard, understood, and respected as you proceed with treatment for your disease.
For more information, please visit http://familydoctor.org/familydoctor/en.html
Gastroenterologist: This is a doctor who specializes in diseases of the gastrointestinal tract.
A Gastroenterologist is a physician with dedicated training and unique experience in the management and study of the normal function and diseases of the esophagus, stomach, intestines, colon and rectum, pancreas, gallbladder, bile ducts and liver.
Some of the symptoms and conditions that might lead you to this type of specialist are:
Crohn’s Disease
Irritable bowel syndrome
Abdominal Pain Syndrome
Belching, Bloating, Flatulence
Gastroparesis (literally translated means “stomach paralysis”)
Chronic heartburn or epigastric pain
Generally speaking, if you are experiencing gas, bloating, diarrhea (acute or chronic), chronic nausea or vomiting, chronic pain in your abdomen, chronic acid reflux or heartburn, dramatic weight loss, often vomiting after a meal, or feeling very full at the beginning of a meal, please seek the medical attention of a gastroenterologist.
You can learn more about various abdominal conditions here: http://patients.gi.org/topics/common-gi-symptoms/ or to find a gastroenterologist near you, simply click on “Find a Gastroenterologist” and entering your zip code on the left side of the same page.
Hematologist: A doctor who treats blood disorders.
This includes problems with the red blood cells, white blood cells, platelets, blood vessels, bone marrow, lymph nodes, spleen, and the proteins involved in bleeding and clotting (hemostasis and thrombosis). Some of these conditions that may relate to lupus are:
Anemia
Blood Clots
Antiphospholipid Syndrome also known as Hughes Syndrome
Nephrologist: A doctor who specializes in diseases of the kidneys.
Lupus nephritis is kidney inflammation caused by systemic lupus erythematosis (SLE) and one of the most serious complications that can result from SLE. Here are some of the symptoms that might indicate lupus related kidney issues:
Foamy Urine- This is often one of the first signs of lupus nephritis.
Blood in the Urine- This is also often one of the first signs of lupus nephritis.
Pain in Your Mid-back or ‘Flank’
Swelling- Usually in the legs, feet, or ankles and less often in the hands or face. This tends to worsen as the day progresses or after sitting (this is called edema).
Dark Urine
High Blood Pressure
Changes in Frequency of Urination- Either much more or much less often.
Vomiting- Toxins that build up because the kidney is unable to remove them from the body can result in abnormal function of the liver and the process of digestion.
Water Retention/ Weight Gain- the entire body may seem bloated and firm, often affecting the legs and hands more than other parts of the body. The kidneys are not able to remove the extra water which is present in the blood of the person affected.
*For acute/urgent symptoms similar those listed above, please seek immediate medical attention.
Neurologist: A neurologist is a doctor who specializes in treating diseases of the nervous system.
The nervous system comprises the central and peripheral nervous system. This complex system involves the spinal cord and the brain. The body’s nervous system is made up of two parts; the central nervous system (CNS) and the peripheral nerve system (PNS). The CNS includes the brain and the spinal cord. Peripheral neuropathy and brain fog are common overlapping conditions for lupus patients. Some of the symptoms and conditions that may be related to conditions of the nervous system and require the expertise of a neurologist are:
Tingling in hands and/or feet
Pain described as sharp, stabbing or burning
Loss of balance
Numbness in hands and/or feet
Heavy feeling in the arms and/or legs, sometimes described as feeling like your legs or arms are “locked” in place
The feeling of wearing tight gloves or socks when you are not
Buzzing, vibrating or shocking sensation in the muscles
*For acute/urgent symptoms similar those listed above, please seek immediate medical attention.
Perinatologist: A specialized obstetrician/gynecologist who focuses the care of the fetus and complicated, high-risk pregnancies. Perinatology is also known as maternal-fetal medicine.
Many lupus patients can absolutely have a successful pregnancy although the risks can be inherently higher for women suffering with SLE. The healthier you are at the time of conception, the better chances for a healthy pregnancy, delivery, and baby. If you are pregnant or are considering becoming pregnant and have lupus, seeking the medical care of a perinatologist is advised. Please also read our blog: Lupus and Pregnancy: What you need to know.
Psychologists: Specific job duties for psychologists vary according to their specialty but they specialize in studying the brain in terms of human behavior and personality.
Counseling psychologists work at schools, hospitals or individual practices. They lead group or individual counseling sessions. Their job involves talking to people and fostering positive mental health and personal growth. Clinical psychologists work to prevent, diagnose and treat mental disorders. These psychologists typically have their own offices and perform diagnostic exams on patients. They also work alongside other physician specialists to determine the best course of treatment for particular patients.
Pulmonologist: A doctor who specializes in diseases of the lungs.
Pulmonology is the subspecialty of internal medicine concerned with diseases of the lungs, trachea, and bronchial tubes, which often involves evaluation of the upper respiratory tract (nose, pharynx and throat) as well as the heart. Inflammation and infections of the chest as well as other pulmonary complications can be symptoms of lupus and may require the expertise of a pulmonologist for proper treatment.
Rheumatologists: Doctors who treat arthritis and other diseases that cause swelling in the joints.
As mentioned before, the primary care doctor for most lupus patients is a rheumatologist, a physician who specializes in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones as well as certain autoimmune diseases including lupus and rheumatoid arthritis.
Some symptoms that may lead you to seek the advice of a rheumatologist are:
Rheumatoid nodules (hard bumps of tissue under the skin along your arms)
Pain, swelling, stiffness, redness, warmth, tenderness in your joints
Stiffness, fatigue in your bones
Fatigue, fever and weight loss
Soft tissue such as the tendons, muscles, and/or ligaments around your joints may also be affected.
Electronic directories for rheumatologists are available on the American College of Rheumatology website: http://ww2.rheumatology.org/directory/geo.asp
Social Workers: Social workers help people solve and cope with problems in their everyday lives. Clinical social workers also diagnose and treat mental, behavioral, and emotional issues.
There are many challenging feelings that will be faced when learning to cope with a chronic disease like lupus, and it is important to know that all of them are normal. The power comes in gaining the understanding of where those feelings are stemming from, so that you are better able to develop techniques for learning to cope with them. With the right tools, support, education, you can ultimately lead a positive and productive life with lupus. The help, support and guidance of a social worker might be a great asset to a patient’s overall health and well-being.
In Conclusion
All of the above specialists should aim to help their patients have the best possible quality of life. They should advocate for the patient in all aspects of health care and support laws that promote patient rights and patient-centered care.
Together, these specialists in cooperation with you, your family doctor or primary physician will provide health information to help you learn how to live with a chronic (long-term) disease. This will most likely include a combination of medications, coping techniques, lifestyle suggestions (including diet and exercise recommendations), advice and guidance on preventing disability or regaining function, and finding ways to improve your quality of life.
To find specialists near you, Healthgrades.com is a great resource!
Sources: http://www.healthline.com/health/neurologist#Overview1, https://www.aad.org/dermatology-a-to-z/about-dermatology/what-is-a-dermatologist, https://www.urmc.rochester.edu/highland/departments-centers/neurology/what-is-a-neurologist.aspx, http://www.healthgrades.com/symptoms/epigastric-pain, http://patients.gi.org/what-is-a-gastroenterologist/, https://www.cardiosmart.org/Heart-Basics/What-is-a-cardiologist, http://www.perinatology.com/dictionary/Perinatologydef.htm, https://www.medicalcareers.nhs.uk/specialty_pages/medicine/immunology.aspx, https://www.asn-online.org/, http://www.hematology.org/Patients/Blood-Disorders.aspx, http://www.rheumatology.org/practice/clinical/patients/rheumatologist.asp, http://www.niams.nih.gov/health_info/lupus/lupus_ff.asp, http://www.hormone.org/contact-a-health-professional/what-is-an-endocrinologist, http://www.acponline.org/patients_families/about_internal_medicine/subspecialties/pulmonology/, http://www.everydayhealth.com/lupus/lupus-diagnosis-start-to-finish.aspx
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**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
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