Medically reviewed and verified by Kate Burke, MD, MHA
Estimated reading time: 6 minutes
Amyloidosis can affect many different parts of the body. If you are going in for treatment, you may have to work with different doctors throughout your health journey. This can be confusing! For many patients, understanding who they are talking to and what they do is a significant roadblock in their experience.
Research into what patients understand about healthcare paints a clear picture. For the majority of people, confusion over medical terminology leads to worse health outcomes. "Health literacy" is the phrase used to describe a person's ability to understand and use healthcare information to make appropriate decisions. It affects outcomes, health care use, and costs. Unfortunately, health literacy in the United States is poor. Nearly 9 out of 10 adults struggle with health literacy. PatientsLikeMe is here to help! In this guide, we are going to explain the eight different areas you may receive care in for your amyloidosis. We will go over the doctors, what they do, and how they help.
Who will you see?
This depends on how your amyloidosis is affecting your body. After a diagnosis, doctors are going to focus on understanding how the condition is progressing. Where in your body is it located? Is it affecting one or more organs? To get a clear picture, you may need to see several specialists. Here are the areas we will focus on:
- Hematology
- Pathology
- Oncology
- Neurology
- Cardiology
- Nephrology
- Transplantation
Hematologists
Hematologists specialize in blood disorders. A sub-specialty of internal medicine, they look at diseases that affect your blood, bone marrow, and lymphatic system. In amyloidosis, they play a key role in diagnosing the condition through blood tests and bone marrow biopsies. They also monitor blood cell counts and help manage any blood-related complications that may arise. These can include issues like anemia or abnormal clotting.
Pathologists
Pathologists are doctors who study the causes and effects of diseases by looking at tissue samples under a microscope. In amyloidosis, pathologists analyze tissue samples (biopsies) to find the presence of amyloid deposits in organs. These can be in the heart, kidneys, or nerves. Biopsies are the most reliable way to find amyloid deposits. This helps confirm the diagnosis and determine the extent of organ involvement.
Oncologists
Oncologists are cancer doctors. While amyloidosis and cancer are different diseases, they have some similarities! AL amyloidosis is caused by abnormal plasma cells in the bone marrow, similar to multiple myeloma. Chemotherapy and targeted therapies may be used to treat AL amyloidosis and reduce the production of abnormal proteins.
Neurologists
Neurologists specialize in disorders of the nervous system. These include anything affecting the brain, spinal cord, and nerves. In amyloidosis, neurologists help diagnose and manage neurological complications. Amyloidosis commonly affects the brain and spinal cord. It can lead to things such as peripheral neuropathy, autonomic dysfunction, or a buildup of amyloid deposits in the brain.
There are other doctors specializing in specific areas of the nervous system besides neurologists. Peripheral nerve specialists (neuromuscular specialists), autonomic specialists, or pain management specialists may also be involved.
Cardiologists
Cardiologists specialize in heart health. Amyloidosis can often lead to heart complications, and keeping on top of these is crucial to long term health. Cardiologists play a key role in diagnosing and managing heart-related symptoms such as heart failure, arrhythmias, or restrictive cardiomyopathy. There is a specific type of amyloidosis called cardiac amyloidosis. Also known as "stiff heart syndrome," this is when amyloids build up in the heart muscle and surrounding tissues. Cardiac amyloidosis is closely watched for because of its severity.
Nephrologists
Nephrologists focus on kidney function and diseases. The kidneys help filter your blood to remove waste, excess water and electrolytes. If their function is impacted, it can lead to serious side effects and kidney failure. In amyloidosis, nephrologists monitor kidney function through blood and urine tests. They also help manage kidney-related complications, such as proteinuria, nephrotic syndrome, or kidney failure. This can occur due to the buildup of amyloid deposits in the kidneys.
Transplantation Doctors
In extreme cases, doctors may need to remove organs affected by amyloidosis. All amyloidosis types are progressive, meaning they will get worse over time without proper treatment. For some, this means facing the potential of heart, kidney, or liver failure depending on which organ is impacted. Doctors that specialize in solid organ transplantation may step in if the disease has progressed far enough.
For some types of amyloidosis, such as AL amyloidosis, stem cell transplantation may be a treatment option. Also known as a bone marrow transplant, this procedure involves replacing the patient's damaged stem cells with healthy ones. After an infusion, the health stem cells travel in the blood stream to the bone marrow. There, they start to divide and make new, healthy blood cells. A successful bone marrow transplant can help prevent the body from continuing to produce the amyloid proteins that cause the condition.
The key to all of this is collaboration. Different specialists need to work together and with you to provide comprehensive care. Each doctor brings unique expertise to the management of the condition. Depending on the specific organ involved, and the symptoms you are experiencing, you may need to meet with one or multiple of these specialists. Knowing who they are and what they do will help!
Nearly 1 million people have joined the site. You can track your health, monitor the efficacy of treatment, and talk to people experiencing the same thing as you. Creating an account is free! Join today.