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Question: Does anyone else on here have amyloidosis? NYDoc: I am all ears. I have many questions. For starters, it has been determined that I have amaloids in my heart and kidneys, I am scheduled for a bone marrow biopsy; am I proceeding in the right direction? Will the bone marrow biopsy determine which type of amyloidosis I have?

Answer: I don't have it but, I have found information that may be helpful: Cardiac amyloidosis usually occurs during primary amyloidosis, also called AL type amyloidosis. Primary amyloidosis is often seen in persons with multiple myeloma, a type of cancer. Cardiac amyloidosis, also called "stiff heart syndrome," occurs when amyloid deposits take the place of normal heart muscle. It is the most typical type of restrictive cardiomyopathy. Patients with cardiac amyloidosis may have changes in the way electrical signals move through the heart. This is called a conduction disturbance. Secondary amyloidosis, also called AA type, rarely affects the heart. However, a subtype of secondary amyloidosis, called senile amyloidosis, involves the heart and blood vessels. Senile amyloidosis is caused by overproduction of a protein different from both the AA and AL types. Senile cardiac amyloidosis is becoming more common as the average age of the population increases. Cardiac amyloidosis is more common in men than in women. The disease is rare in people under age 40. Symptoms: Palpitations (sensation of feeling heart beat) Swelling of legs, ankles, or other part of the body (See: abdominal swelling) Excessive urination at night Fatigue, reduced activity tolerance Shortness of breath with activity Trouble breathing while lying down Some patients may have no symptoms. Exams and Tests: It can be difficult to diagnose cardiac amyloidosis, because the signs can be related to a number of different conditions. The health care provider may hear abnormal sounds in the lung (lung crackles) or a heart murmur when listening to your heart and chest with a stethoscope. This may suggest fluid in the lungs, enlargement of the heart, or other illness. A physical exam may reveal a swollen liver and enlarged neck veins. Blood pressure may be low or may drop when you stand up. The following tests may be used to help diagnose cardiac amyloidosis: Echocardiogram Chest x-ray Chest or abdomen CT scan Coronary angiography Nuclear heart scans (MUGA, RNV) Magnetic resonance imaging (MRI) An ECG may show problems with the heart beat or heart signals (conduction disturbance). A cardiac biopsy is used to confirm the diagnosis. A biopsy of another area, such as the abdomen, kidney, or bone marrow, is frequently done to confirm the diagnosis of amyloidosis. Treatment: You can continue to exercise as long as feel like you can. Your doctor may tell you to change your diet. This may include salt and fluid restrictions. Diuretics (water pills) may be given to help the body remove excess fluid. The doctor may tell you to weigh yourself everyday. A weight gain of three or more pounds over 1 or 2 days can mean there is too much fluid in the body. Digoxin, calcium channel blockers, and beta blockers may be used with caution in patients with atrial fibrillation. However, the dosage must be carefully monitored, since patients with cardiac amyloidosis may be unusually sensitive to any side effects. Other treatments may include: Chemotherapy Prednisone, an anti-inflammatory medicine Pacemaker, if there are problems with heart signals A heart transplant may be considered for some patients with very poor heart function. However, it is not done in those with AL type amyloidosis, since the disease weakens many other organs. A liver transplant is needed in those with hereditary amyloidosis. ________________ Yes, it does sound like you are going in the right direction & yes they should be able to diagnose whic type by the bone marrow biopsy. Good luck! Here's some additional resources that you might like to read through:

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