My observation is that my IgA has gone up each time (from 526 in Feb, 542 in April and last week 557) my Serum Kappa is also increasing as is my K/L Ratio. I have multiple autoimmune triggered conditions (Sarcoidosis, Osteo Arthritis, Peripheral Neuropathy, muscle atrophy, bilateral fasciculations, exocrine pancreatic insufficiencies and I am looking at this picture and wondering if it could be paraneoplastic syndrome with MGUS. When do I need to come back for further exploration and what difference would it make?
My observation is that my IgA has gone up each time (from 526 in Feb, 542 in April and last week 557) my Serum Kappa is also increasing as is my K/L Ratio. I have multiple autoimmune triggered conditions (Sarcoidosis, Osteo Arthritis, Peripheral Neuropathy, muscle atrophy, bilateral fasciculations, exocrine pancreatic insufficiencies and I am looking at this picture and wondering if it could be paraneoplastic syndrome with MGUS. When do I need to come back for further exploration and what difference would it make?
Welcome to Connect, @paulatjohn738. Thank you for sharing your experience with the fluctuation in IgA in relation to your Kappa light change ratio changes. It sounds like you have routine blood work done to keep tabs on your MGUS diagnosis.
You have a fair number of autoimmune conditions. Do you feel these are related to your MGUS diagnosis?
How long ago was a full workup completed for you?
I wonder if it is paraneoplastic syndrome. The hematology oncologist here in Naples hasn't heard of it. I meet with him again tomorrow. I was originally diagnosed at Mayo Rochester August 2022 and recommended for routine follow-up. My GP sent me to a local neurologist who sent me to the hematologist here. My question: is the direction of my lab results and the suspicion of paraneoplastic justify a trip back to Mayo? I have never had a bone marrow biopsy or a Bone Density Scan. I did have spinal puncture done in Rochester (it was negative for whatever they told me they were looking for).
I wonder if it is paraneoplastic syndrome. The hematology oncologist here in Naples hasn't heard of it. I meet with him again tomorrow. I was originally diagnosed at Mayo Rochester August 2022 and recommended for routine follow-up. My GP sent me to a local neurologist who sent me to the hematologist here. My question: is the direction of my lab results and the suspicion of paraneoplastic justify a trip back to Mayo? I have never had a bone marrow biopsy or a Bone Density Scan. I did have spinal puncture done in Rochester (it was negative for whatever they told me they were looking for).
It’s never a bad point of judgment to seek a second opinion if you’re concerned that your case is becoming more complicated that it was when diagnosed a year ago. It sounds like things have changed since your initial diagnosis?
A bone marrow biopsy could give your doctor a clearer picture of what’s going on with your overall marrow health…the heart of the blood manufacturing center of the body. Though you have these other autoimmune conditions and it might be useful to have the input of a rheumatologist along with your hematologist. Mayo has an excellent reputation for working collaboratively with different specialists all on one team so that you’re not piece-milling your symptoms and treatments. I am a bit biased, having gone through some major blood cancer treatments and SCT at Mayo, but if this were me, I’d consider returning to Mayo to have a followup.
Are most of these auto immune issues relatively new after your diagnosis? Have they worsened over the past year?
I went in with the Sarcoidosis and muscle wasting. I would say they are little unchanged. I did not see a Hematologist at that time. In light of this change I will look into a trip back.
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
I was diagnosed with MGUS recently based on an elevated kappa lambda ratio and elevated kappa free light chains. I had pain-free migraine auras twice in the last year or so, and I’ve never had them before. I went to a hematologist oncologist, finally after more than three years, and was diagnosed. The doctor said I have a low risk of developing multiple myeloma.
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?
My kappa lambda ratio is 3.36. I was diagnosed with MGUS after chasing a diagnosis for three years. My symptoms have been mild, some swollen joints in my fingers which the doctor say are chilblains. They are not particularly painful, but are concerning to me. I also have a high rheumatoid factor.
I believe that the MGUS may be connected to the Covid vaccines I’ve had. I am pro-vaccine and have had all the Covid vaccines offered including the boosters.
There are articles that have found a correlation between chilblains and Covid vaccines. I am hoping that what I have will either resolve itself or be minor and not worsen.
Since I am a new user, it won’t let me post the links, but I will later. A simple Google search will show them.
I'm 69 and was diagnosed with IgA light chain kappa MGUS 8 years ago. My kappa/lambda ratio has been gradually creeping up but goes up and down, and is about 11, kappa is 120 mg/L. Risk of MGUS morphing to SM or MM is about 1% a year. I don't have any symptoms from MGUS, and no known cause for these (hopefully always just) precancerous plasma cells. There is a lot of medical misinformation and outright quackery on the web. If you are looking for answers it is best to get them from doctors, peer-reviewed medical journals (NIH and such), and ResearchGate. Even online journals can have questionable pedigrees (I'm a research scientist). In my quest to be a lab rat, I'm trying 2 gm/day of bioavailable curcumin (from turmeric) to see how that affects my kappa numbers (lots of brands, I'm trying Qunol). Here are some papers on MGUS: https://my.clevelandclinic.org/health/diseases/17744-monoclonal-gammopathy-of-undetermined-significance-mgus https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445886/
Here is one on covid vaccines not impacting MGUS: https://ashpublications.org/blood/article/140/Supplement%201/261/487616/Sars-Cov-2-Vaccinations-Do-Not-Lead-to-Progression
My thoughts are that I may not actually have MGUS as my kappa lambda ratio is quite low 3.36 though still outside the normal range. There are several journal articles about reactions to the Covid vaccine resulting in chilblain like lesions. I don’t know the quality of these journals. I am wondering if I may be having a mild reaction to the vaccine that’s causing my immune system to respond a bit.
The journal articles are based generally on a very few instances. I’m still not allowed to send any Internet addresses.
My thoughts are that I may not actually have MGUS as my kappa lambda ratio is quite low 3.36 though still outside the normal range. There are several journal articles about reactions to the Covid vaccine resulting in chilblain like lesions. I don’t know the quality of these journals. I am wondering if I may be having a mild reaction to the vaccine that’s causing my immune system to respond a bit.
The journal articles are based generally on a very few instances. I’m still not allowed to send any Internet addresses.
@connectingdots, I noticed that you wished to post URLs to several journal articles with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
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My observation is that my IgA has gone up each time (from 526 in Feb, 542 in April and last week 557) my Serum Kappa is also increasing as is my K/L Ratio. I have multiple autoimmune triggered conditions (Sarcoidosis, Osteo Arthritis, Peripheral Neuropathy, muscle atrophy, bilateral fasciculations, exocrine pancreatic insufficiencies and I am looking at this picture and wondering if it could be paraneoplastic syndrome with MGUS. When do I need to come back for further exploration and what difference would it make?
Welcome to Connect, @paulatjohn738. Thank you for sharing your experience with the fluctuation in IgA in relation to your Kappa light change ratio changes. It sounds like you have routine blood work done to keep tabs on your MGUS diagnosis.
You have a fair number of autoimmune conditions. Do you feel these are related to your MGUS diagnosis?
How long ago was a full workup completed for you?
I wonder if it is paraneoplastic syndrome. The hematology oncologist here in Naples hasn't heard of it. I meet with him again tomorrow. I was originally diagnosed at Mayo Rochester August 2022 and recommended for routine follow-up. My GP sent me to a local neurologist who sent me to the hematologist here. My question: is the direction of my lab results and the suspicion of paraneoplastic justify a trip back to Mayo? I have never had a bone marrow biopsy or a Bone Density Scan. I did have spinal puncture done in Rochester (it was negative for whatever they told me they were looking for).
It’s never a bad point of judgment to seek a second opinion if you’re concerned that your case is becoming more complicated that it was when diagnosed a year ago. It sounds like things have changed since your initial diagnosis?
A bone marrow biopsy could give your doctor a clearer picture of what’s going on with your overall marrow health…the heart of the blood manufacturing center of the body. Though you have these other autoimmune conditions and it might be useful to have the input of a rheumatologist along with your hematologist. Mayo has an excellent reputation for working collaboratively with different specialists all on one team so that you’re not piece-milling your symptoms and treatments. I am a bit biased, having gone through some major blood cancer treatments and SCT at Mayo, but if this were me, I’d consider returning to Mayo to have a followup.
Are most of these auto immune issues relatively new after your diagnosis? Have they worsened over the past year?
I went in with the Sarcoidosis and muscle wasting. I would say they are little unchanged. I did not see a Hematologist at that time. In light of this change I will look into a trip back.
Thank you.
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1 ReactionI was diagnosed with MGUS recently based on an elevated kappa lambda ratio and elevated kappa free light chains. I had pain-free migraine auras twice in the last year or so, and I’ve never had them before. I went to a hematologist oncologist, finally after more than three years, and was diagnosed. The doctor said I have a low risk of developing multiple myeloma.
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Hug
1 ReactionMy kappa lambda ratio is 3.36. I was diagnosed with MGUS after chasing a diagnosis for three years. My symptoms have been mild, some swollen joints in my fingers which the doctor say are chilblains. They are not particularly painful, but are concerning to me. I also have a high rheumatoid factor.
I believe that the MGUS may be connected to the Covid vaccines I’ve had. I am pro-vaccine and have had all the Covid vaccines offered including the boosters.
There are articles that have found a correlation between chilblains and Covid vaccines. I am hoping that what I have will either resolve itself or be minor and not worsen.
Since I am a new user, it won’t let me post the links, but I will later. A simple Google search will show them.
I'm 69 and was diagnosed with IgA light chain kappa MGUS 8 years ago. My kappa/lambda ratio has been gradually creeping up but goes up and down, and is about 11, kappa is 120 mg/L. Risk of MGUS morphing to SM or MM is about 1% a year. I don't have any symptoms from MGUS, and no known cause for these (hopefully always just) precancerous plasma cells. There is a lot of medical misinformation and outright quackery on the web. If you are looking for answers it is best to get them from doctors, peer-reviewed medical journals (NIH and such), and ResearchGate. Even online journals can have questionable pedigrees (I'm a research scientist). In my quest to be a lab rat, I'm trying 2 gm/day of bioavailable curcumin (from turmeric) to see how that affects my kappa numbers (lots of brands, I'm trying Qunol). Here are some papers on MGUS: https://my.clevelandclinic.org/health/diseases/17744-monoclonal-gammopathy-of-undetermined-significance-mgus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445886/
Here is one on covid vaccines not impacting MGUS: https://ashpublications.org/blood/article/140/Supplement%201/261/487616/Sars-Cov-2-Vaccinations-Do-Not-Lead-to-Progression
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4 ReactionsMy thoughts are that I may not actually have MGUS as my kappa lambda ratio is quite low 3.36 though still outside the normal range. There are several journal articles about reactions to the Covid vaccine resulting in chilblain like lesions. I don’t know the quality of these journals. I am wondering if I may be having a mild reaction to the vaccine that’s causing my immune system to respond a bit.
The journal articles are based generally on a very few instances. I’m still not allowed to send any Internet addresses.
@connectingdots, I noticed that you wished to post URLs to several journal articles with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Allow me to post them for you, including the titles of the papers:
- SARS-CoV-2 Vaccination and Chilblain-like Lesions: What Do We Know so Far? (2022) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9681186/
- Free Light Chains κ and λ as New Biomarkers of Selected Diseases (2023) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10253807/
- Post-vaccination COVID Toes (Chilblains) Exacerbated by Rituximab Infusion Suggests Interferon Activation as Mechanism (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8500133/
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1 Reaction