Desperately seek answer . really high kappa lambda light chain numbers

@randyb66
Welcome to Mayo Clinic’s Connect. You certainly have a lot of plates spinning at the same time. I’m sure your head is spinning as well.
It seems as though your PCP needs to make some referrals to rule out the scary stuff that is burdening you with worry. Your inclination to seek out the scrutiny of a hematologist is certainly reasonable, although it’s important that you put things in perspective. You don’t have a diagnosis so it’s premature to panic. Panic isn’t good for you anyway.
Try not to jump ahead of yourself and let the diagnostic process unfold. They will poke and prod, scan and test to rule things out that they can check off the list. Often times people’s fears are ungrounded and what looks symptomatic is actually not.
Be an assertive consumer and ask for what you need to get to the source of what you are worried about. Referrals to specialists, solid diagnosis and an action plan take some time but you’ll then know what you’re dealing with.
We are all very different, but once you know what you are dealing with and how any co-existing conditions might impact you, I suspect you will have a clearly defined path.
Will you let me know where you go from here?
Hugs.

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.

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.

I find it interesting that the same issues seem to accompany MGUS . For what it is worth, my kappa lambda ratio is generally around 30 while the "normal" is said to be between 0.26 up to 1.65. In the past is has been over 40 but generally my MGUS has been "stable" over the last 8 years. I had some cardiac issues although I have never heard of ATTR. I was diagnosed with visible atrial fibrillation and receive treatment for that and also elevated blood pressure. I have also had recent eye (and continuing) surgery. Although somewhat older than randyb66 at 79, I gave up smoking when was 12 (67years ago), no drugs, very little drinking and spend more than 7 hours a week in exercise and am widely regarded as active. I am not diabetic.

Anything you randyb66, do should be with advice from your medical team but I recommend some focus on exercise and that should go with making sure you have medications that do not interfere with an exercise lifestyle.

Hope that helps.

Also referring to randyb66 "Black dots" issue. I recently had eye (cataract) surgery and that resulted in wet macular degeneration for which I am also having further treatment. I also had the black "floaties" mentioned by randyb66. My eye surgeon suggested a supplement called Bromelain in 500mg capsules. It is derived from pineapple components and it has certainly removed the black "floaties". The eye specialist said that people normally take it for joint pain but they noticed that it eliminated the floaties after a time. I have noticed that if anything it removes the joint pain in my fingers more quickly but it has certainly also removed the floaties within 2 months.

I do appreciate the recommendation. I eat my fair share if fresh pineapple as I truly enjoy it. However the black dots I have been diagnosed with don't float. They are scar structures upon the retina itself. But I have begun the testing thru gastroentrology. And only one test so far has come back "abnormal" in the stool samples. So once again, I am put in the position of having more questions than answers still. And I am still waiting on the nuclear heart test results.

Oh please belive me, I get more than my fair share of exercise for my age. On my average day I walk 8 ro 10 miles. And that due to my job. I also do the equivalent in stair steps that range from 7 to 12 floors. And that is nearly everyday. You see, I am a delivery driver for a multimillion dollar company. Amazon. I don't know to many my age that can undertake the physical aspects I endure nearly every day.

As for the ATTR. it does not surprise me that you have not heard about it. It is a very rare and very under diagnosed disorder. I knew nothing of it until I heard a PSA (Public Service Announcement) concerning it. And had I not had 9 of the 11 known symptoms I would still not know anything about it. But as I said before, the symptoms of the disorder are such that no one, not even doctors put it together that they are all caused by this one issue. Because the symptoms are so unrelated to one another. Who would ever connect carpal tunnel to heart failure. Or spinal stenosis?

Thanks randyb66,
I don't recall your age but what you say is easy for me to believe. My next birthday will be my 80th. I do a regime of 20 press-ups,200 sit-ups, bike 21kms walk 660metres in 6 in a 6 minute walk test as the start of a 5k walk . I do the exercises daily, the bike ride 4days weekly and the others 2 days a week. there are stairs in my home.
My point is that if you always do it, you should always be able to.

I'll be seeing my GP on Tuesday and asking for more info about ATTR. I think I share the same concerns as you do.

Doctors are as human as the rest of us but they do know stuff. You need the doctors as well as to take care of yourself. Asking the right questions is important. I don't think I have ATTR but I do think there is value in feeding the question into their equation.