Hello friends,
First I’ll connect to your discussion then ask a very different question. I have IgM kappa MGUS. My hematologist always likes to see how the kappa is doing and it’s been elevated but fairly stable so far, with normal kappa lambda ratio.
Now for a completely different subject. MGUS was diagnosed in 2015. The following year I had the first experience with a
Migraine Aura without headache. I’ve never had any headache. My question to other MGUS, or related Dx, folks is whether you may have experienced the optical effects of these so-called silent auras. Keeping track, I’ve had about 20 of them since 2016.
I’m posing this question because I’m wondering whether there may be any connection between MGUS and Migraine Aura. Who better to ask than our kind group? Looking forward to hearing from you, as well as any suggestions which may come to mind! Thank you! ~~~Raye
Hello Raye,
I am one of those fortunate humans who is not burdened by headaches at all so I am poorly informed, but that is not something I experience with my MGUS.
What does your hematologist say? I am interested in how the symptom dots sometimes connect back to the MGUS dx. But sometimes they don’t as well. Regardless, I’m so sorry. Migraines must be awful.
Patty
I was diagnosed with MGAS a few months after the covid vaccine.
I had inflammation of heart and lungs, skin, and leg weakness and foot swelling. They checked the #s every 4 to 6 months. It got better, but now my latest kappa/lambda chains free with ratio, serum is 2.48, the normal range is .26 -1.65.. my family doctor doesn't understand what this is..
I'm trying to get a professional explanation of what is going on. What is your range?
Hello Donna. I very much agree with the suggestion that you seek the counsel of a good hematologist who is very experienced in treating multiple myeloma. We MGUS patients will hopefully never need to worry about MM treatment because for most, the MGUS never progresses that far. Regardless, I find that PCPs rarely know much about it but hopefully know enough to refer you to a specialist. Be insistent about that.
Qualified oncology/hematology doctors are in great demand. It took me quite a bit of time to get into one. I did not get to see my first choice, but I have been well satisfied with the care that I have received from a hem/onc doc with whom I was not familiar. If you get a good one, you will know because they will be so excited about all the advances that have been made, and the treatment of multiple myeloma over the last decade. I have to remind mine that we have talked about this before because he gleefully pulls up all the latest research when I go in. Such a science nerd. I love him.
One of the things that was helpful to me so that I don’t get bogged down in all the numbers in my lab reports is to ask the question, “at what point would you consider doing something besides watch and wait?” it helped me to know his thinking about when he would want additional information and maybe I should start worrying then and not now.
We all go to Dr. Google and his glass is half empty, for sure. So all of that data is in the back of our minds and that’s no place to live your life. I try to live each day fully and enjoy it. I don’t know exactly what’s going to happen in the next six months or six weeks or even six days. I do know that the flowers in my garden are gorgeous this summer, I have trips to look forward to and fun things to do with friends and that sweet, sweet husband of mine.
Life is good.
Keep the faith in the science. It is working for us.
Patty
Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
I was wondering if I can have a high free kappa light chain and not have anything? In my blood tests it said that my kappa light chain was 2.62. In PROTEIN ELECTROPHORESIS PATH REVIEW, SERUM it said no monoclonal protein identified. Does that mean my doctor will do a bone marrow test next? Almost 2yrs ago I had squamous cell carcinoma growing in/on my foot. I had it surgically removed and was monitored with blood tests and PET CT'S. My doctor moved from within that hospital company to a new one. I liked NY doctor and had to search for him becaise I wanted him to keep being my doctor. Well I found him, he asked me if I've had any changes, I said yes I am tired all the time, I have trouble wanting to eat sometimes(I only get hungry for food once a day, sometimes not at all but have to force myself to eat because I will get nauseous, a headache and sometimes dizzy). He said he was going to do every blood test, even to check for anemia. He ordered a PET CT for me to take anywhere to have since I live so far away from where he practices now. My Free Kappa light chain is high. Any thoughts? Or ideas as to why?
Yes. Mine is 26.7. Going to hematology oncologist this week. On the phone last week I couldn’t understand all the terminology. She did want to see me in person and not on a zoom call which we have done sometimes.
My Immunoglobulin is high also at 503.
I’ve been exhausted for almost 2 years.
in reply to @denisegs What was the Kappa/Lambda ratio? I have light chain issues as well, and also while a recent isoenzyme test showed off the wall results, it is the LD4 that is most important, as I have been told. My LD4 is normal, so I am not going to worry about this anymore. While I may have a mild form of Hypogammaglobulinemia, I am not prone to serious infections, nor have I been diagnosed with any blood serum disorders such as MGUS. Best of luck.
I was wondering if I can have a high free kappa light chain and not have anything? In my blood tests it said that my kappa light chain was 2.62. In PROTEIN ELECTROPHORESIS PATH REVIEW, SERUM it said no monoclonal protein identified. Does that mean my doctor will do a bone marrow test next? Almost 2yrs ago I had squamous cell carcinoma growing in/on my foot. I had it surgically removed and was monitored with blood tests and PET CT'S. My doctor moved from within that hospital company to a new one. I liked NY doctor and had to search for him becaise I wanted him to keep being my doctor. Well I found him, he asked me if I've had any changes, I said yes I am tired all the time, I have trouble wanting to eat sometimes(I only get hungry for food once a day, sometimes not at all but have to force myself to eat because I will get nauseous, a headache and sometimes dizzy). He said he was going to do every blood test, even to check for anemia. He ordered a PET CT for me to take anywhere to have since I live so far away from where he practices now. My Free Kappa light chain is high. Any thoughts? Or ideas as to why?
in reply to @a33 Did you have any isoenzyme tests done as well? I too have light chain issues but have been assured that my hypogammaglobulinemia is rather minor and I am not prone to infections, or rather, serious ones. While all of my results were over the top abnormal, my LD4, the most important one, was normal, which means I have a whole lot less to worry about.
I'm not sure if this will help but it can't hurt. My Kappa Light Chains are at 45 and I was freaking out. I went to see my Dr and he was so pleased to see them "so low" I asked him what he was talking about and he said he has seen 300 and 400 and that I should enjoy my summer and see him in 6 months! Granted, I am otherwise very healthy but I do have MGUS. I just wanted you to know that one number in itself does not make a full picture.
Yes. Mine is 26.7. Going to hematology oncologist this week. On the phone last week I couldn’t understand all the terminology. She did want to see me in person and not on a zoom call which we have done sometimes.
My Immunoglobulin is high also at 503.
I’ve been exhausted for almost 2 years.
My hematology asked me if there were any changes and I said yes, I have to take a nap everyday because I am so tired which doesn't make sense because I'm 36. He said he was going to check everything. I hope you are ok.
in reply to @a33 Did you have any isoenzyme tests done as well? I too have light chain issues but have been assured that my hypogammaglobulinemia is rather minor and I am not prone to infections, or rather, serious ones. While all of my results were over the top abnormal, my LD4, the most important one, was normal, which means I have a whole lot less to worry about.
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Hello Raye,
I am one of those fortunate humans who is not burdened by headaches at all so I am poorly informed, but that is not something I experience with my MGUS.
What does your hematologist say? I am interested in how the symptom dots sometimes connect back to the MGUS dx. But sometimes they don’t as well. Regardless, I’m so sorry. Migraines must be awful.
Patty
-
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Helpful -
Hug
2 ReactionsHello Donna. I very much agree with the suggestion that you seek the counsel of a good hematologist who is very experienced in treating multiple myeloma. We MGUS patients will hopefully never need to worry about MM treatment because for most, the MGUS never progresses that far. Regardless, I find that PCPs rarely know much about it but hopefully know enough to refer you to a specialist. Be insistent about that.
Qualified oncology/hematology doctors are in great demand. It took me quite a bit of time to get into one. I did not get to see my first choice, but I have been well satisfied with the care that I have received from a hem/onc doc with whom I was not familiar. If you get a good one, you will know because they will be so excited about all the advances that have been made, and the treatment of multiple myeloma over the last decade. I have to remind mine that we have talked about this before because he gleefully pulls up all the latest research when I go in. Such a science nerd. I love him.
One of the things that was helpful to me so that I don’t get bogged down in all the numbers in my lab reports is to ask the question, “at what point would you consider doing something besides watch and wait?” it helped me to know his thinking about when he would want additional information and maybe I should start worrying then and not now.
We all go to Dr. Google and his glass is half empty, for sure. So all of that data is in the back of our minds and that’s no place to live your life. I try to live each day fully and enjoy it. I don’t know exactly what’s going to happen in the next six months or six weeks or even six days. I do know that the flowers in my garden are gorgeous this summer, I have trips to look forward to and fun things to do with friends and that sweet, sweet husband of mine.
Life is good.
Keep the faith in the science. It is working for us.
Patty
-
Like -
Helpful -
Hug
2 ReactionsI was wondering if I can have a high free kappa light chain and not have anything? In my blood tests it said that my kappa light chain was 2.62. In PROTEIN ELECTROPHORESIS PATH REVIEW, SERUM it said no monoclonal protein identified. Does that mean my doctor will do a bone marrow test next? Almost 2yrs ago I had squamous cell carcinoma growing in/on my foot. I had it surgically removed and was monitored with blood tests and PET CT'S. My doctor moved from within that hospital company to a new one. I liked NY doctor and had to search for him becaise I wanted him to keep being my doctor. Well I found him, he asked me if I've had any changes, I said yes I am tired all the time, I have trouble wanting to eat sometimes(I only get hungry for food once a day, sometimes not at all but have to force myself to eat because I will get nauseous, a headache and sometimes dizzy). He said he was going to do every blood test, even to check for anemia. He ordered a PET CT for me to take anywhere to have since I live so far away from where he practices now. My Free Kappa light chain is high. Any thoughts? Or ideas as to why?
Was everything else ok? I mean was it just your kappa that was high? Serious question becaise I'm trying to understand my blood tests.
Yes. Mine is 26.7. Going to hematology oncologist this week. On the phone last week I couldn’t understand all the terminology. She did want to see me in person and not on a zoom call which we have done sometimes.
My Immunoglobulin is high also at 503.
I’ve been exhausted for almost 2 years.
-
Like -
Helpful -
Hug
2 Reactionsin reply to @denisegs What was the Kappa/Lambda ratio? I have light chain issues as well, and also while a recent isoenzyme test showed off the wall results, it is the LD4 that is most important, as I have been told. My LD4 is normal, so I am not going to worry about this anymore. While I may have a mild form of Hypogammaglobulinemia, I am not prone to serious infections, nor have I been diagnosed with any blood serum disorders such as MGUS. Best of luck.
-
Like -
Helpful -
Hug
1 Reactionin reply to @a33 Did you have any isoenzyme tests done as well? I too have light chain issues but have been assured that my hypogammaglobulinemia is rather minor and I am not prone to infections, or rather, serious ones. While all of my results were over the top abnormal, my LD4, the most important one, was normal, which means I have a whole lot less to worry about.
Thank you!
My hematology asked me if there were any changes and I said yes, I have to take a nap everyday because I am so tired which doesn't make sense because I'm 36. He said he was going to check everything. I hope you are ok.
What is a LD4? Where do I find that on the test?