Preparing for your appointment

You may be referred to a doctor who specializes in blood disorders (hematologist).

What you can do

  • Write down your symptoms, including any that may seem unrelated to the reason why you scheduled the appointment.
  • Make a list of all your medications, vitamins and supplements.
  • Write down your key medical information, including other conditions.
  • Write down key personal information, including any recent changes or stressors in your life.
  • Write down questions to ask your doctor.
  • Ask a relative or friend to accompany you, to help you remember what the doctor says.

Questions to ask your doctor

  • What's the most likely cause of my symptoms?
  • What type of amyloidosis do I have?
  • What organs are affected?
  • What stage am I?
  • What kinds of tests do I need?
  • What kind of treatments do I need?
  • Am I at risk of long-term complications?
  • What types of side effects can I expect from treatment?
  • Do I need to follow any dietary or activity restrictions?
  • I have another health condition. How can I best manage them together?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions during your appointment.

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may provide time to go over points you want to spend more time on. You may be asked:

  • 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 perform normal daily tasks? Are you often tired?
  • Have you noticed that you bruise easily?
  • Has anyone in your family ever been diagnosed with amyloidosis?
July 07, 2017
References
  1. Gorevic PD. An overview of amyloidsosis. https://www.uptodate.com/home. Accessed April 27, 2017.
  2. Ferri FF. Amyloidosis. In: Ferri's Clinical Advisor 2017. Philadelphia, Pa.: Elsevier; 2017. https://www.clinicalkey.com. Accessed April 27, 2017.
  3. AskMayoExpert. Renal amyloidosis (adult). Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2016.
  4. Rajkumar SV. Clinical presentation, laboratory manifestations and diagnosis of immunoglobulin light chain (AL) amyloidosis (primary amyloidosis). https://www.uptodate.com/home. Accessed April 27, 2017.
  5. Gorevic PD. Pathogenesis of secondary (AA) amyloidosis. https://www.uptodate.com/home. Accessed April 27, 2017.
  6. AskMayoExpert. Cardiac amyloidosis. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2016.
  7. Gertz MA. Immunoglobulin light chain amyloidosis: 2016 update on diagnosis, prognosis, and treatment. American Journal of Hematology. 2016;91:947.
  8. Dispenzieri A, et al. Treatment of Immunoglobulin Light Chain Amyloidosis: Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART) Consensus Statement. Mayo Clinic Proceedings. 2015;90:1054.
  9. McKenna WJ. Clinical manifestations and diagnosis of amyloid cardiomyopathy. https://www.uptodate.com/home. Accessed May 16, 2017.
  10. Maurer MS, et al. Genotype and Phenotype of Transthyretin Cardiac Amyloidosis. Journal of the American College of Cardiology. 2016;68:161.
  11. Brown AY. Allscripts EPSi. Mayo Clinic, Rochester, Minn. March 30, 2017.
  12. Gorevic PD. Genetic factors in the amyloid diseases. http://www.uptodate.com/home. Accessed April 27, 2017.
  13. Gertz MA (expert opinion). Mayo Clinic, Rochester, Minn. May 1, 2017.
  14. Rajkumar SV, et al. International Myeloma Working Group updated criteria for the diagnosis of multiple myeloma. The Lancet oncology. 2014;15:e538.