The signs and symptoms of amyloidosis are often vague and mimic those of other conditions, so it can be difficult to diagnose amyloidosis. Your symptoms may first prompt you to see your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in blood disorders (hematologist).
Here's some information to help you get ready for your appointment, and what you might expect from your doctor.
What you can do
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins and supplements that you're taking.
- Ask a family member or friend to join you. Sometimes it can be difficult to take in all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For amyloidosis, some basic questions to ask your doctor include:
- What's the most likely reason I'm having these symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need?
- What treatments are available, and which do you recommend?
- What's my prognosis with each treatment?
- What types of side effects can I expect from treatment?
- Are there any dietary or activity restrictions that I need to follow?
- I have another health condition. How can I best manage them together?
- Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your doctor may ask:
Aug. 06, 2011
- When did you first begin experiencing symptoms?
- How is your appetite? Have you recently lost weight without trying?
- Have you experienced any shortness of breath?
- Are you often tired?
- Have you noticed that you bruise easily?
- Have you noticed any leg swelling?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- Are you able to work and perform normal daily tasks?
- Does anything seem to improve your symptoms?
- Does anything make your symptoms worse?
- Has anyone in your family ever been diagnosed with amyloidosis?
- Gorevic PD. An overview of amyloidosis. http://www.uptodate.com/home/index.html. Accessed June 25, 2011.
- Amyloidosis. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/sec12/ch160/ch160a.html. Accessed June 25, 2011.
- Naqvi BH, et al. Amyloidosis. In: Ferri FF. Ferri's Clinical Advisor 2011: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2011. http://www.mdconsult.com/books/about.do?eid=4u1.0-B978-0-323-05610-6..C2009-0-38600-6--TOP&isbn=978-0-323-05610-6&about=true&uniqId=230100505-53. Accessed June 25, 2011.
- Seldin DC, et al. Amyloidosis. In: Fauci AS, et al. Harrison's Online. 17th ed. New York, N.Y.: The McGraw-Hill Companies; 2008. http://www.accessmedicine.com/content.aspx?aID=2863105. Accessed June 25, 2011.
- Rajkumar SV. Prognosis and treatment of immunoglobulin light chain (AL) amyloidosis and light and heavy chain deposition diseases. http://www.uptodate.com/home/index.html. Accessed June 25, 2011.
- Gertz MA (expert opinion). Mayo Clinic, Rochester, Minn. June 26, 2011.