Working with your doctor when you have amyloidosis

Amyloidosis — a condition that causes abnormal proteins to build up in your body's tissues and organs — can be a challenging condition to diagnose and treat. Its symptoms can appear similar to those of other conditions. And although treatment can help manage symptoms and slow the protein buildup, there's no cure. Because of these challenges, choosing a doctor with whom you can communicate well and preparing for your appointments can help you get the best care.

Choose a doctor

If you don't have a doctor who specializes in blood disorders (hematologist) or are considering finding another, it may help to:

  • Decide what qualities are important to you. Does it matter where a doctor is located or whether he or she is affiliated with a hospital or network of specialists? Does the doctor need to be a good listener or have a certain number of years of experience? Decide which qualities are essential and which you could do without.
  • Ask for recommendations. Ask family members, friends and other doctors who they recommend and why. Ask questions to determine whether the recommended doctors have the qualities you've decided are essential. Based on your research, create a short list of doctors who you'd like to talk to.
  • Call or meet your top choices. Call the doctor's office to ask if the doctor is taking new patients. You can also ask the office about the doctor's education and experience and any office and payment policies. An introductory appointment can help you decide whether the doctor is someone with whom you'd like to partner. But know that you may be charged for this appointment.

    After your first appointment, consider whether you felt comfortable, had your questions fully answered, felt listened to and found things easy to understand. If not, you may want to consider another doctor.

Prepare for your appointment

Once you've chosen a doctor, whether you're scheduling your first appointment or follow-up appointments, it's a good idea to prepare in advance. Before you meet with your doctor:

  • Make a list of any symptoms you're experiencing. Include all of your symptoms, even if you don't think they're related.
  • Make a list of any medications, herbs or vitamin supplements you take. Include how often you take them and the doses.
  • Ask a family member or close friend to accompany you, if possible. You may get a lot of information at your visit, and it can be difficult to remember everything.
  • Take a notepad or electronic device with you. Use it to make notes of important information during your visit.
  • Prepare a list of questions to ask your doctor. List your most important questions first, to be sure you address those points.

For amyloidosis, some basic questions to ask your doctor could include:

  • What type of amyloidosis do I have?
  • What tissues or organs are affected?
  • How will this type of amyloidosis progress, and can it be slowed down?
  • What kinds of tests do I need?
  • What kind of treatments do I need, and what is the goal of each treatment?
  • Why do you recommend these treatments?
  • What types of short-term and long-term side effects can I expect from my treatment?
  • Am I at risk of long-term complications from amyloidosis?
  • How will the condition and treatment affect my daily life?
  • Do I need to follow any dietary or activity restrictions?
  • I have another health condition. How can I best manage them together?
  • Are there support services available to me?
  • Who will be leading my care, and who should I call with questions or concerns?

Make sure that you understand everything your doctor tells you. Don't hesitate to ask your doctor to repeat information or to ask follow-up questions for clarification.

What to expect from your doctor

Some potential questions your doctor might ask include:

  • When did you first begin experiencing symptoms? How severe are they, and are they continuous or occasional?
  • Does anything seem to make your symptoms better or worse?
  • How is your appetite? Have you recently lost weight without trying?
  • Have you experienced any leg swelling?
  • Have you experienced shortness of breath?
  • Are you able to work and do normal daily tasks? Are you often tired?
  • Have you noticed that you bruise easily?
  • Do you feel pain or tingling?
  • Do you have trouble swallowing?
  • Has anyone in your family ever been diagnosed with amyloidosis?

Your relationship with your doctor is important. To get the best care, be sure to speak up at any time with questions and concerns. At the end of your appointments, summarize what you learned. Your doctor can then correct anything you might've missed or misunderstood. Together, you can work to address your symptoms.

May 01, 2019 See more In-depth