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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
I relate. I don’t have the liver treatment complication but when I read about MGUS before and after diagnosis I was freaked out. My white count soared which, in my mind, validated all my fears and I couldn’t eat, sleep and I swam in the river of self absorbed negativity. Yuck.
I had to step back and let my critical thinking kick in.
MGUS is a watch and wait diagnosis for the most part. The statistics are on our side as most of the time it does not advance to smoldering or multiple myeloma. Yay! So when your doctor says he’s looking, he’s going to watch your lab results to ensure that the MGUS is not advancing. In this regard, I just relax and let mine do his thing. He’ll tell me if things change.
I am not an expert but I don’t think I have any symptoms associated with MGUS. I have well controlled Type 2 diabetes. I have neuropathy in both feet. Some MGUS patients complain of neuropathy and/or skin rashes. Hard to know if my neuropathy is related to the MGUS or the type 2.
I think the objective is to eat, exercise and defend against all health issues as best we can. Psychologically, you know you. Do what you can to mitigate stress and anxiety. As you experienced how that mind-body connection works, protect yourself from stress as much as you can. You have a lot on your plate.
For me…I don’t use My Chart to read results before I am sitting with my physician who will answer my questions.
Dr Google is a pessimist. Not going there. It’s like preparing to go for a swim by reading about drowning. Nope.
I had to shop for a hematologist/oncologist. We don’t have cancer but in the unlikely event our MGUS progresses, I want my doc to be well-experienced and know me and my history. (You want a gastroenterologist who has done thousands of colonoscopies successfully rather than a rookie, right?). I am getting my care at a local cancer treatment center. They are the experts.
Live your life. I know you have other worries than MGUS but don’t think of the MGUS stuff as a foregone conclusion. It’s not.
So glad you checked in. Let us know how you are doing.
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Thank you very much for your kind response.
I also have neuropathy, but it is related to my weight loss. When I sit more than 30 minutes my feet/legs go numb. The neurologist suggested a donut pillow, which I will look into.
I have skin rashes that are more than likely due to the dilated pancreatic and liver ducts, but will find out more next month when I see the hepatologist, which took over 6 months to get the appointment. Sutter kept telling me I would never be able to see this doctor because she only treats those who need a transplant. After he told me this I called her office, and lo and behold they had been trying to reach me!
I filed a grievance against my gastroenterologist because of some things he told me, and the manner in which he showed great disrespect for me when I was asking questions.
If my father had not died of the myeloma, I probably would not be giving any thought/energy to this news; having said that, I am doing my best to remain positive, occupied and things of that nature.
Yes, I will live my life and will not give in to whatever is going on. It really is not my nature to sit around thinking about what is wrong with me, but I do tend to "overthink" everything.
You have provided me with hope. Thank you