← Return to Desperately seek answer . really high kappa lambda light chain numbers

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@kayabbott

I've had Kappa light chain MGUS for 8 years and my Kappa is 132 and Kappa/Lambda is 13. Your numbers are still fairly low and a hematologist can run more definitive blood tests to see if you have MGUS. One research paper that I read referred to MGUS as having deranged plasma cells, which I prefer to precancerous because for the majority of people it doesn't morph into cancer, it just stays as asymptomatic MGUS. Regarding black dots on retinas, it depends on what caused them, such as shadows from floaters, diabetic retinopathy, genetic changes, aging, or others so it is good that you are investigating. A colonoscopy can give a lot of answers. I am 70 and have celiac disease and collagenous colitis (microscopic colitis), which was detected with a colonoscopy 7 years ago. I mostly manage my herd of autoimmune diseases with eating healthy food (no gluten), exercise, getting enough sleep, avoiding stress, and I keep a food log in case I collect food intolerances or symptoms. You are in a tough place and I hope you can get some answers and treatments soon.

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Replies to "I've had Kappa light chain MGUS for 8 years and my Kappa is 132 and Kappa/Lambda..."

I do appreciate the words of knowledge. As for the Kappa Lambda light chain numbers, I have not been diagnosed with any autoimmune disorders. And never heard of MGUS. However what I am being checked for is like I said ATTR (Transthyretin Amyloid cardiomyopothy) it is a protein made by the plasma cells associated with the liver or kidneys that become unstable and collapse. When they collapse they become sticky and build up in the other organs within the body and can affect the joints and heart. You see I am only 57 years old. Who has been having a considerable amount of heart related issued. I also have chronic kidney disease, heart disease, Gerd, spinal stenosis of both the lumbar area and in my entire neck. I also have constant fatigue shortness of breath chest pain abnormal T waves and ST waves, and the way that my red blood cells have been described is that they are abnormally shaped. And the plasma cells are foamy inside. Right now as I have said I am waiting on the results of a nuclear heart test results. But no one can seem to be able to tell me how long it takes for those results to come in.
As for the black dots? As I stated an eye Surgeon is the first one to tell me about them and he was the one that recommended I have an gastroentrologist investigate. As these specific spots are most commonly associated with a person having colon cancer. The concerns that started the investigation down this path toward ATTR was due to me having 9 of the 11 symptoms that go along with the disorder. None of which, other than fatigue, tiredness, shortness of breath would anyone associate with heart failure. As the rest are spinal stenosis, numbness of the extremities, feet, legs, arms and hands. Carpal tunnel in both hands. Swelling of the lower legs. All those symptoms I deal with everyday. And the spinal stenosis became so severe in my lower spine it was slowly paralyzing me. And I was in constant pain and could not stand for even thirty minutes and could not even walk 100 yards. My lower spine is already fused as a TLIF was done. I now have 10" rods in my spine. And I am headed toward the same for my neck as it is already in the moderate stage. I also have multiple bulging disks two slipped vertebre that have slid backwards over each other forcing my spinal cord into a kidney shape. I fully belive that this is all related to one thing and being caused by one thing. I am already taking a medication to control the rate of my heart beat as it goes to racing at times for no reason or at the slightest exertion. And extreme heat situations are really bad for me. They will set my heart to racing , skipping beats squirming along with extreme sweating. I also have to carry nitro pills with me at all times. As I said, I am only 57 years old. I don't drink. Never have. I stopped smoking over 32 years ago. Never did drugs. And I have done my best to live a healthy lifestyle. I used to exercise and have always been active. Even now I am very active. I am a delivery driver for Amazon. But all this has slowed me down as it continues to worsen with time.
With all that said, oh yeah before I forget I am also a type 2 diabetic. Hypoglycemia. However I control that with diet and exercise. With all that said, I hope that you now can better understand my worries and concerns and why I am seeking answers. As my cardiologist put it, I am too young to be dealing with much of these things that I am having to as most don't occur in people until they are in their 70's and 80's.