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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
@lizzyr1114 hello!
I think blood disorders in general are pretty much out of the purvey of the typical PCP. From my own experience, my PCP made a referral right away to a hematologist/oncologist. She said that she was doing this because it is beyond her expertise. I appreciate that a generalist has to be knowledgeable about many things, but this blood disorder stuff is pretty specialized.
A specialist will probably agree with your PCP that it’s nothing to worry about, but you will then have information from someone who treats patients with MGUS, smoldering Multiple Myeloma and multiple Myeloma every day.
From my limited lay person understanding of free light chain elevations, they might look for a plasma disorder which might not necessarily mean MGUS. So I would definitely want to explore that further.
Try to avoid self-diagnosing because Dr Google will scare you with its glass-half-empty approach. Get your information from a specialist.
If you do have MGUS and that pesky M protein is in your blood, they will take good care of you. Regular bloodwork to watch for any progression, they will get to the source of that back pain and you will receive a solid diagnostic workup. I feel quite confident that I receive excellent medical care.
Try to stay calm and carry on but find a good doc. Ask lots of questions. Write them down and insist that you get them answered. Advocate for yourself.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Let us know what you find out. Wishing you the best possible outcome.
Patty
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Hi, @pmm - what to do if the hematologists/oncologists at your clinic "don't treat MGUS"?
I was recently diagnosed with MGUS at Mayo Clinic. It seems to be kappa light-chain MGUS from comparing my test results to my extensive reading.
FLC ratio is 5.64, bone marrow was 5% abnormal kappa plasma cells, mutation from FISH testing was t(11;14)(q13;32).
I had pushed for further testing due to the LC ratio and so got fat pad and bone marrow biopsies done. The internal medicine doc handling this was commendably open to my concerns about progressing to AL amyloidosis, given my presenting symptom of somewhat rapidly-progressing length-dependent axonal peripheral neuropathy.
But I have not spoken with a hem/onc because "this is only MGUS". Rather, a hem/onc was called as a consult to my doctor, not to me. Fortunately he did agree to the bone marrow biopsy with FISH analysis and ordered it, so now I have a better picture of what's going on.
Because my abnormal plasma cells are only at 5% and my light chains are relatively low, though with an abnormal ratio, and no amyloids were found by biopsy, I've been advised to wait 6 months and test again. But what about the peripheral neuropathy? It started at the bottoms of my feet in July, approximately, and had progressed to the top of my knees by November.
For my own peace of mind, I found a local lab where I can get the FLC test run for under $200 self-pay, so I can check that before having to wait 6 more months to check whether there's progression.