Patient Comments: Amyloidosis - Other Illnesses


Please describe any other illnesses you have suffered in addition to amyloidosis. Submit Your Comment

Comment from: Fergie61, 55-64 Female (Patient) Published: March 19

I went from being a healthy, active mother of 2, administrator and aerobics instructor to overnight feeling ill, at 41 in 2003, with developed severe systemic pain, chronic fatigue syndrome, 50 lb. weight gain, diarrhea, severe constipation, narcolepsy. I was diagnosed with Epstein-Barr and hypothyroid, but why! IGeneX test was positive for Lyme disease. Last week they found amyloidosis in rectal polyp, but not in plasma or organs. Waiting for tests and scared to death.

Comment from: AL Amyloidosis/MM, 55-64 Male (Caregiver) Published: August 07

My husband, 58 years old, was diagnosed with multiple myeloma in December 17, a plasmacytoma, had a double bypass, and AL amyloidosis in his heart and gastrointestinal tract. He has gone from 217 lb. to 148 lb. in 7 months, and has bone pain, constipation, diarrhea, stomach cramps, pain and tingling in hands and feet, vomiting, atrial fibrillation, high heart rate, and blood pressure all over the place. He takes Revlimid, Velcade, and dexamethasone. Terrible, scary disease, they say it is environmental and not genetic.

Comment from: Jules, 65-74 Male (Caregiver) Published: December 19

My husband went into the hospital May 2017 with fluid in his lungs. Both were drained. Then he was diagnosed with congestive heart failure. He was in and out of the hospital and rehabilitation centers 7 times from May till November 2017. Finally in June he was diagnosed with amyloidosis. He had all the symptoms, weakness, swelling, falling, and weight loss, all of them. His last time home was two days before Thanksgiving 2017. He passed away the day after Thanksgiving. He did really well in therapy, I think to be able to come home and die. I am struggling with his absence and the lack of knowledge about this disease and the lack of help that is out there for it. He was 74 years old.

Comment from: Casey, 55-64 Male (Patient) Published: August 15

My father died of familial amyloidosis in 1987. I was diagnosed in 3/12 when I was 62 years old, I have type Thr60Ala. I have autonomic and peripheral nerve damage, and had cardiac amyloidosis as well. This type requires a heart/liver transplant from the same donor, I was on the waiting lists. I received the dual transplants in 12/13. I am now 8 months out, transplants are doing good, still have to contend with my transthyretin polyneuropathy symptoms. I may go on drug therapy soon, once my immunosuppressants go to lower maintenance dosages.

Comment from: berrypicker, 55-64 Female (Patient) Published: February 28

I was diagnosed in 2012 with amyloidosis. I thought I was having heart problems but that turned out to be acid reflux and the amyloid deposit was found in my stomach when they did the scope for the reflux. I also have an ulcer found at that time. I have Sjogren’s syndrome and sub-acute cutaneous lupus. I take clobetasol for the plaques from the lupus, and Nexium for the reflux. I have no pain, but find I am often more tired than I was. I have read that reducing or eliminating gluten from the diet may help prevent some of the buildup of amyloid chains, and that there are some essential oils that may be of benefit. I am trying to structure my diet to remove refined sugar, gluten, red meat, caffeine, and all processed and deep fried foods. I’m also am adding omega 3, turmeric and probiotics along with my regular vitamins. I read that bromelain helps as well, and will add that when I check with my doctor.

Comment from: maureen, 65-74 Male (Caregiver) Published: January 31

My father was just diagnosed with stage 3 chronic kidney disease. He's 72 years old. A Vietnam veteran and was exposed to 'Agent Orange'. Wonder if it is possible this is AL amyloidosis from many years of this storing in his fatty tissues.

Comment from: Kate, 55-64 Female (Patient) Published: February 11

I was diagnosed with primary AL amyloidosis in November 2012. My symptoms were dry mouth, constant heart palpitations, muscle fatigue, light-headedness, fatigue, being able to eat only very small portions of food and found meat very difficult. I was diagnosed with Graves’ disease because my thyroid was on the extreme hyper end of the scale. After this misdiagnosis it took almost a year to correctly diagnose my condition. I was happy that there was a chance to stop this blood disease and was fully expecting chemotherapy with stem cell transplant. I instead was treated with a chemotherapy drug Velcade and dexamethasone. It was like a miracle! My light chain levels went from 287 to 24 in one cycle of treatment! I had four more cycles of treatment to be certain and then was taken off but my levels remain in the normal range. I have congestive heart failure and am dealing with it through having a very low sodium diet, drinking no more than 1 1/2 liters of fluid a day taking Lasix or water pills. It takes a very long time to see progress but I feel better and better every day. There really is a lot of hope for amyloidosis. I think this website needs to update their information on amyloidosis treatments.

Comment from: GINGER, 55-64 Female (Patient) Published: December 16

I was diagnosed with hereditary systemic amyloidosis in 2001. I have been attending the hospital where the amyloidosis center is based. I have recently been in hospital with a suspected blood clot in my lung, my D-dimer which should be around 500 is over 4000 and the doctors now think that I have scarring in the lungs, but do not know the cause (they usually blame the amyloidosis if they don’t know what’s wrong with me).


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