hI Rich, Hope that your test results show that you are still close to a normal situation for your health. There is a condition called 'non secretory' myeloma though. That is when monoclonal proteins are not seen on an electrophoresis test. Patients with non secretory myeloma are followed thru the serum free light chains, bone marrow biopsies and probably other tests too. (I am not a doctor, just a patient, but have heard of this condition). In the Beacon resources, an article from 2012 details this...Dr. B. Nair describes nonsecretory myeloma.
The Top Myeloma Beacon Resource Articles Of 2011
Published: Jan 20, 2012 2:08 pm
Dr. Bijay Nair
Nonsecretory Multiple Myeloma – Since less than 5 percent of all patients with multiple myeloma have nonsecretory myeloma, these patients often have a hard time finding information about their type of myeloma. In his column, Dr. Nair discussed the basics of nonsecretory myeloma, how patients with this type of myeloma are diagnosed, followed, and treated, what the prognosis is for these patients, and how secretory myeloma can become nonsecretory.
Forums
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: High kappa / lambda ratio - worried
Thanks for the information, definitely useful. I don't want to get too worried yet as the blood work was just done and the kappa result was a big surprise.
Still waiting for a call back from the neurologist to see what the next course of action is but I feel like my overall body pain is getting worse but that could be from just thinking about it or from the nerve medication I am taking. Hard to tell sometimes but the pain does wake me up most nights.
Still waiting for a call back from the neurologist to see what the next course of action is but I feel like my overall body pain is getting worse but that could be from just thinking about it or from the nerve medication I am taking. Hard to tell sometimes but the pain does wake me up most nights.
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rluck9974 - Name: Rich
Re: High kappa / lambda ratio - worried
Well, the neurologist emailed me back regarding the high ratio and if I need further testing. This is what she said.
The kappa lambda test is nonspecific, especially given that the immunofixation is normal. If the immunofixation is abnormal, then we recommend seeing a hematologist, but I was pleased to see that it was normal, so I don't recommend further testing.
I guess that makes me happy, although I am still having bilateral leg pain and feet numbness. Does nonspecific mean they don't know what the cause is yet, or that they don't feel the high ratio and low lambda is causing my pain and numbness?
The kappa lambda test is nonspecific, especially given that the immunofixation is normal. If the immunofixation is abnormal, then we recommend seeing a hematologist, but I was pleased to see that it was normal, so I don't recommend further testing.
I guess that makes me happy, although I am still having bilateral leg pain and feet numbness. Does nonspecific mean they don't know what the cause is yet, or that they don't feel the high ratio and low lambda is causing my pain and numbness?
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rluck9974 - Name: Rich
Re: High kappa / lambda ratio - worried
rluck9974,
Have you had any updates or new information regarding your test results or symptoms?
My blood work looks an awful lot like yours – normal kappa, low lambda leading to elevated ratio; negative immunofixation tests – and I'm not getting a lot of information about what this could be. My hematologist acknowledged my abnormal results and symptoms (neuropathy and bleeding / coagulation abnormalities), but thus far has not recommended a biopsy. It's been 8 months since I began seeking medical attention for my symptoms and I'm still no closer to finding out what this is ... or isn't, hopefully.
Have you had any updates or new information regarding your test results or symptoms?
My blood work looks an awful lot like yours – normal kappa, low lambda leading to elevated ratio; negative immunofixation tests – and I'm not getting a lot of information about what this could be. My hematologist acknowledged my abnormal results and symptoms (neuropathy and bleeding / coagulation abnormalities), but thus far has not recommended a biopsy. It's been 8 months since I began seeking medical attention for my symptoms and I'm still no closer to finding out what this is ... or isn't, hopefully.
Re: High kappa / lambda ratio - worried
That's interesting that you have the same results. No info yet as my next appointment is on July 19. I am not currently seeing a hematologist as per my last post as the neurologist didn't think it was necessary. It's even more confusing as she said the kappa lambda test was non specific so that makes me think they don't know what's causing my symptoms.
They were leaning towards small fiber neuropathy from my last visit although I don't think it's that as I am very tired and I am starting to get weakness in legs especially my left to go along with sore legs for virtually no reason at all. I go to the gym a few days a week and have been for years and I am in pretty good shape so they should not be hurting in the middle of the night and morning even when I don't go to the gym.
My last visit was two months ago and my symptoms have been getting worse especially with my legs. I think it's something other than small fiber at this point because of my symptoms and the abnormal kappa lambda test and I kinda of feel like they do to based on my own research.
I guess it's a wait and see with this kinda of stuff.
They were leaning towards small fiber neuropathy from my last visit although I don't think it's that as I am very tired and I am starting to get weakness in legs especially my left to go along with sore legs for virtually no reason at all. I go to the gym a few days a week and have been for years and I am in pretty good shape so they should not be hurting in the middle of the night and morning even when I don't go to the gym.
My last visit was two months ago and my symptoms have been getting worse especially with my legs. I think it's something other than small fiber at this point because of my symptoms and the abnormal kappa lambda test and I kinda of feel like they do to based on my own research.
I guess it's a wait and see with this kinda of stuff.
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rluck9974 - Name: Rich
Re: High kappa / lambda ratio - worried
Hi again,
I just had an appointment last Friday with a new hematologist / oncologist who recommended a bone marrow biopsy and (if clean) a fat pad biopsy to rule out AL amyloidosis. He said free light chain results such as ours (normal kappa, low lambda, high ratio) are not hugely alarming in and of themselves, and if there were no symptoms he wouldn't be recommending biopsy. However, considering that I have neuropathy, he thought biopsy would be prudent.
Hope you make some progress at your next appointment!
I just had an appointment last Friday with a new hematologist / oncologist who recommended a bone marrow biopsy and (if clean) a fat pad biopsy to rule out AL amyloidosis. He said free light chain results such as ours (normal kappa, low lambda, high ratio) are not hugely alarming in and of themselves, and if there were no symptoms he wouldn't be recommending biopsy. However, considering that I have neuropathy, he thought biopsy would be prudent.
Hope you make some progress at your next appointment!
Re: High kappa / lambda ratio - worried
Hi rluck9974,
Since we had very similar free light chain test results (high kappa / lambda ratio due to low lambda, with normal kappa), I wanted to update regarding my situation, in case it's of any help for you in your diagnostic process.
I just got results back from a bone marrow biopsy and all was well, with no evidence of any plasma cell dyscrasia (thankfully!). Now, the way the hematologist / oncologist explained it to me, the clean bone marrow biopsy effectively rules out myeloma and more or less eliminates AL amyloidosis, which was of great concern for me, given that I have neuropathy symptoms.
As I understand it, a bone marrow biopsy is relatively insensitive for detecting the presence of amyloid. Fat pad and affected organ biopsies are more sensitive for actually detecting amyloid. BUT I was told that a completely clean bone marrow biopsy with no evidence of plasma cell disorder would be pretty dang unusual for a case of AL amyloidosis, so he told me that the odds of having AL amyloidosis in my case were very very low.
For now the doc has recommended that we simply re-run the free light chain test in 6 months, and if the ratio is still elevated, then consider fat pad biopsy.
Since we had very similar free light chain test results (high kappa / lambda ratio due to low lambda, with normal kappa), I wanted to update regarding my situation, in case it's of any help for you in your diagnostic process.
I just got results back from a bone marrow biopsy and all was well, with no evidence of any plasma cell dyscrasia (thankfully!). Now, the way the hematologist / oncologist explained it to me, the clean bone marrow biopsy effectively rules out myeloma and more or less eliminates AL amyloidosis, which was of great concern for me, given that I have neuropathy symptoms.
As I understand it, a bone marrow biopsy is relatively insensitive for detecting the presence of amyloid. Fat pad and affected organ biopsies are more sensitive for actually detecting amyloid. BUT I was told that a completely clean bone marrow biopsy with no evidence of plasma cell disorder would be pretty dang unusual for a case of AL amyloidosis, so he told me that the odds of having AL amyloidosis in my case were very very low.
For now the doc has recommended that we simply re-run the free light chain test in 6 months, and if the ratio is still elevated, then consider fat pad biopsy.
Re: High kappa / lambda ratio - worried
That's interesting stuff. I am not even sure the doctors I am seeing are even leaning towards any type of myeloma, but based on your results, I am not sure why. My next appointment is July 19 and I am looking forward to it.
I do have considerable weakness on the left side of my body compared to my last appointment of two months ago. This is to go along with the numbness in my feet and pain in my legs. I have also noticed my grip strength is down. I have a grip strength tool similar to the ones they use at doctor's offices. My grip strength at my last appointment was 132 on my both hands using their tool. Now it is 115 on the right and 100 on the left using my tool two months later. Could just be that I was stronger that day but I do feel weaker overall, but like I said earlier, I am a regular gym person and I am in pretty good shape, so for me to feel weakness is unusual.
What other symptoms do you have that caused your doctors to refer you to a hematologist?
Thanks for updating, by the way.
I do have considerable weakness on the left side of my body compared to my last appointment of two months ago. This is to go along with the numbness in my feet and pain in my legs. I have also noticed my grip strength is down. I have a grip strength tool similar to the ones they use at doctor's offices. My grip strength at my last appointment was 132 on my both hands using their tool. Now it is 115 on the right and 100 on the left using my tool two months later. Could just be that I was stronger that day but I do feel weaker overall, but like I said earlier, I am a regular gym person and I am in pretty good shape, so for me to feel weakness is unusual.
What other symptoms do you have that caused your doctors to refer you to a hematologist?
Thanks for updating, by the way.
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rluck9974 - Name: Rich
Re: High kappa / lambda ratio - worried
Hi again and very sorry to hear about the progressive weakness that you're experiencing. I am also an avid gym goer and I've noticed a slight decrease in strength as well, primarily in my grip. It's not super pronounced, as I can still crank out about 18-19 free-hanging pull-ups at one time, but whenever I find myself doing something like dumbbell shrugs, for instance, my grip gives out long before the muscles that are actually supposed to be worked.
To answer your question, the reason why I was referred to a hematologist (after several months of requesting a referral) was that I was and still am breaking out daily in petechiae, which is little tiny broken blood vessels that are visible on the skin. Generally these are usually the result of either 1) having too few platelets, or 2) having platelets that don't function properly for some reason.
Well, we checked my platelet count via a CBC and it was within the normal range. My GP told me to just not worry about it, which didn't sit very well with me, as it seemed unusual to be so unconcerned about a patient hemorrhaging every day. Finally, after several months, my GP agreed to refer me onto a hematologist, who did some blood work that came up positive for platelet problems due to von Willebrand disease, a bleeding disorder that is usually fairly mild and usually hereditary.
The problem was that no one in my family has a history of bleeding problems whatsoever, and my symptoms only came on at the age of 31, so I had my suspicions that this could be a case of 'acquired' von Willebrand disease, which is a relatively frequent complication of plasma cell diseases like myeloma, amyloidosis and MGUS.
Looking into those diseases a bit, I realized I had several other symptoms that were characteristic of plasma cell disorders, like a year-long history of bilateral, widespread neuropathy and paresthesia, some minor weight loss, and back pain.
At this point I requested that my hematologist test me for these diseases and she refused, so I took it upon myself to order the necessary tests (serum and 24 hour urine electro / immunofixation, serum free light chains) myself.
Long story short, my labs came out very similar to yours (all normal except for high kappa / lambda ratio due to low lambda). I then made an appointment with a second hematologist / oncologist to get a second opinion, and his impression was that a bone marrow biopsy was needed. Luckily it came back clear, as I mentioned in my previous post, but I still suffer from a lot of symptoms:
Cheers!
To answer your question, the reason why I was referred to a hematologist (after several months of requesting a referral) was that I was and still am breaking out daily in petechiae, which is little tiny broken blood vessels that are visible on the skin. Generally these are usually the result of either 1) having too few platelets, or 2) having platelets that don't function properly for some reason.
Well, we checked my platelet count via a CBC and it was within the normal range. My GP told me to just not worry about it, which didn't sit very well with me, as it seemed unusual to be so unconcerned about a patient hemorrhaging every day. Finally, after several months, my GP agreed to refer me onto a hematologist, who did some blood work that came up positive for platelet problems due to von Willebrand disease, a bleeding disorder that is usually fairly mild and usually hereditary.
The problem was that no one in my family has a history of bleeding problems whatsoever, and my symptoms only came on at the age of 31, so I had my suspicions that this could be a case of 'acquired' von Willebrand disease, which is a relatively frequent complication of plasma cell diseases like myeloma, amyloidosis and MGUS.
Looking into those diseases a bit, I realized I had several other symptoms that were characteristic of plasma cell disorders, like a year-long history of bilateral, widespread neuropathy and paresthesia, some minor weight loss, and back pain.
At this point I requested that my hematologist test me for these diseases and she refused, so I took it upon myself to order the necessary tests (serum and 24 hour urine electro / immunofixation, serum free light chains) myself.
Long story short, my labs came out very similar to yours (all normal except for high kappa / lambda ratio due to low lambda). I then made an appointment with a second hematologist / oncologist to get a second opinion, and his impression was that a bone marrow biopsy was needed. Luckily it came back clear, as I mentioned in my previous post, but I still suffer from a lot of symptoms:
- Daily petechiae due to von Willebrand's of some variety
- Near constant tingling in my fingers and hands, occasional tingling in feet
- Allodynia pain in the left forearm and inner bicep (super sensitive to the touch)
- Weight loss that can be reversed, but requires a pretty heroic amount of calories
- Constant ringing ears
- Back pain (although this one has been more or less solved, as I have a massively herniated disc in my lower back)
- Daily night sweats. Not "drenching," but definitely noticeable and wake me up every night. Odd thing is, though, that I always take my temperature when I wake up sweating and I never have a fever. In fact, the highest my temperature has ever been upon waking up sweating has been about 97.8 degrees.
Cheers!
Re: High kappa / lambda ratio - worried
Hi rluck9974,
I recall from your previous post that you were going to have a follow-up appointment in late July, and I was wondering how it went? Any closer to figuring out what's up?
Hope you're doing well!
I recall from your previous post that you were going to have a follow-up appointment in late July, and I was wondering how it went? Any closer to figuring out what's up?
Hope you're doing well!
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