It sometimes takes up to a year for someone to receive an amyloidosis diagnosis This is because symptoms, including swelling and fatigue, can be vague. It’s important to see a specialist who knows how to diagnose amyloidosis and understands the symptoms.
If your health care provider believes you may have amyloidosis, you will need certain exams and tests. We use blood and urine tests to see if you have abnormal proteins.
You should expect to be asked questions about your health history, your symptoms, risk factors and family history of disease. Understanding your background will help your provider make a diagnosis.
Your provider will also give you a physical exam. You may have one or more of the following tests.
Images of the affected organs can help us make a diagnosis. Imaging tests can find abnormal protein deposits and rule out other causes of symptoms. Which imaging tests you receive will depend on the organs affected:
- Echocardiogram. This test uses sound waves and can show damage to the heart.
- Computed tomography (CT). A CT scan uses X-rays to create detailed pictures of organs.
- Magnetic resonance imaging (MRI). This test uses magnets to create 3D images of the inside of the body.
You may need a biopsy to determine if amyloidosis is affecting one of your organs. Doctors may perform a biopsy of the heart, liver or kidneys.
A biopsy removes a small amount of tissue or cells from the body to be checked by a pathologist under a microscope.
A biopsy is done with local anesthesia by a specialist. Local anesthesia uses medicine to numb the area where a needle will be inserted.
A biopsy may be performed with imaging guidance. Ask your provider about your specific type of biopsy to learn more.
Patients will be contacted after testing by a Markey team member to review results. Further management will be recommended at that time.
A second opinion can be helpful if you’re unsure about your treatment options. Our team of experts works together to diagnose and treat amyloidosis, with a focus on individualized patient care.
Markey is among the best cancer centers in the nation, according to U.S. News & World Report when it comes to advanced treatment options, survival rates and experienced providers. As the one and only NCI-designated cancer program in Kentucky, Markey is able to serve many patients each year with rare and common cancers.
Our team is happy to work with your doctors and communicate to ensure confidence in your diagnosis.
A second opinion can help to ensure that you get the latest and most effective therapy for treating amyloidosis. The following are common reasons for seeking a second opinion after your initial diagnosis:
- You are having difficulty understanding your diagnosis.
- You want to learn more about treatment options, including clinical trials and advanced technologies only available at an advanced center like Markey.
- Your health insurance requires a second opinion before continuing toward treatment.
Questions to ask when getting a second opinion
When you are diagnosed with amyloidosis, you may have a lot on your mind. Here a few questions to ask your doctor when arriving for your second opinion:
- Where is the amyloidosis located?
- What subtype of amyloidosis do I have?
- What type of treatment do you recommend and why?
- What type of side effects come along with this treatment?
- Should I consider taking part in a clinical trial?
- If I need biopsy, where will the incision be?
- If I need a biopsy, how much tissue will be removed?
- What type of follow-up care will I need?
- When can I go back to my normal activities?
