Possible Al Amylodiois

Posted by tripc @tripc, Jul 21, 2023

Hello All,
I have several questions and hope this is the right sub forum.
I had a bone marrow biopsy done 5 years ago for severe bone pain and the results came back normal but they did not do any congo red staning to see if I had Amylodosis now for the last 2 years I have had recurrent issues with ectopic heart beats both PVc's&Pac's with lowered heart rate sometimes in the low 40's have seen several cardiologist with no explanation as to why I'm having the problem all that was suggested was ablation recently went back to see the same Oncologist that had the Myeloma test done and had to press him to do some more blood work again.I recently went to to the ER and my BNP has been on the rise for the last year the Oncologist did a CBC& CMP, which was normal also CRP and Sed rate and both were high,Protein Electrophoresis was all normal but the Free Kappa And Lambda Light Chains with Ratio, Quantitative was elevated Oncologist said only that they were slightly elevated and wasn't concerned I thought any numbers out of range would be a concern I know this is a long read but any info anyone can provide would be greatly appreciated.THX

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casey1329 | @casey1329 | Jul 22, 2023

My husband, age 71 has PVC's (1,200) and low pulse rate (45) . The cardiologist said that the PVC's were not that bad and the low pulse rate is because my husband exercises a lot but I'm not so sure that the doctor is right. He also had a slightly elevated Kappa Free Light & Lambda Light Chains as well as very elevated CRP & Sed Rates. My husband started to watch his weight, stopped drinking and started to walk and get his 10,000 paces in a day. The CRP & Sed rates are now normal but still has PVC's & low pulse, haven't tested the light chains. So here we are, I share your concerns.

oldkarl | @oldkarl | Jul 22, 2023

This is interesting, and potentially very helpful. The real point is that if you feel the need, you can search until death for your bodily and mental realities and never reach the end of them. For example, my ancestry includes some important clues to me. I have Ashkenazi Jew traces, so I can trace much of my ancestry to Noah and one of his sons. I also have marks of Pacific Islanders, Asian, African Black, and some others. Well, this is fun, and even helpful. A have been found to have Crohns, Amyloidosis, Lymphomas, thyroid problems, and even about a couple dozen types of cancer. And I have had 57 cancer surgeries and direct treatments. And besides all that, I am darned good looking and smart. Oh, well...... oldkarl

naiviv | @naiviv | Jul 23, 2023

In reply to @casey1329 "My husband, age 71 has PVC's (1,200) and low pulse rate (45) . The cardiologist said..." + (show)

@casey1329 My husband who is 80 yrs old has been suffering for months with the same health issues. His PVC’s have come down since he has been taking Diltiazem 120mg but still gets them. He went to ER several times with shortness of breath, dizziness and weakness before starting this med 2 months ago. Then after his last visit to ER and visiting specialists (neurologist, ENT, urologists, infectious disease specialists, pulmonologists) we decided to go to Mayo Clinic in Jacksonville FL for 2nd opinion. He has his cardiologists there when we were living in FL. The cardiologist found out he had the Kappa/Lambda proteins very high as well as finding he has Cardiac Amyloidosis. His hematologist ordered 2 biopsies to confirm Amyloidosis: the results confirmed Amyloidosis in addition to the finding of plasma cells acting up resulting in the increase of these proteins which are causing his Amyloidosis. He started with Vyndamax for his Amyloidosis and this coming Tuesday he will start with low dose chemotherapy to stop the progression of the proliferation of these plasma cells. I have to confess that we were not expecting for him to start with chemo treatment but the hematologist told him that if he decided not to take the chemo the disease would be fatal. My husband had cancer in 2017 with Proton therapy radiation in Jacksonville FL too but never had chemo. We just pray this chemo treatment with this new drug “daratumumab” stops this condition. Hope you find solutions for your husband.

casey1329 | @casey1329 | Jul 23, 2023

Wow, you two are going through a lot. However, it sounds like you are doing everything possible and are on the right track. I wish you all the best.

tripc | @tripc | Jul 23, 2023

In reply to @naiviv "@casey1329 My husband who is 80 yrs old has been suffering for months with the same..." + (show)

Hope it works for him best wishes.

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