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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
The above was found in his blood serum test but follow-up 24 hr urine test showed only 2 free Kappas. Has anyone had experience with this? Does the urine test supersede the serum testing? Either way, is there anything to do other than “watchful waiting?”
BTW, he also has Dysautonomia (Diabetic T2).
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Thank you for giving further insight to what should not be a problem. One big issue is a dr always wants to specialize these days. Maybe we should add holistic to our list???
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1 Reactionin reply to @evergreen2022 I recently gave access to all of my medical records to my former rheumatologist, who is now a friend since she retired, and last Sunday we talked about her "differential diagnosis" and those items she found interesting in the review of all of my tests. Obviously, my doctors kept rerunning the same tests, getting the same results. She is a fantastic diagnostician to say the least, and her assessment was that I have something called Scleroderma Limited, which I plan to discuss with my PCP in a couple of weeks. This diagnosis makes absolute sense, as I have many of the features of this autoimmune disorder. Finally someone who knows how to interpret test results, take the time to consider what they all mean as a "whole" and come up with a diagnosis that no one had even considered previously, including a rheumatologist I saw a few months ago, and who's only question to me was whether or not I had bubbles in my urine. LOL.
I too have had to ask my PCP to run certain labs at the behest of my friend, who is still highly respected at Sutter, even though she has retired. I may have mentioned that she asked me if any of my clinicians had done a complete exam, of which I responded, "no." One time several months ago I made an appointment with my PCP regarding my ankles that swell up when I wear socks. He could have very easily reached down and checked my ankles while I was laying on the examination table, but did not. However, he sent me a message the following day that I had to come back in so that he could take a look at my ankles. Go figure.
We are all aware of how much medicine has changed for the worse, and is not expected to improve any time soon, right? I have learned to become a good advocate for myself, but sometimes it is downright exhausting. I mean, really, "come back in so I can check your ankles."
I like you, have more than a layman's understanding of medical stuff, having worked in the insurance industry for many years, and having to pour through volumes of medical records so that I could understand and evaluate a person's claim for injuries that would knock your socks off. I also lived with a critical care nurse for ten years, and that in itself was an education.
I recently took a survey for the Immunodeficiency Foundation, another very good site, and several questions addressed whether or not I had confidence in my doctors, which I do not. Sadly, one has to really learn to navigate the system, often alone and without resources.
Thank you for your great post.
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1 ReactionSame here. Good thing I did this time! Maybe we should volunteer as patient advocates somewhere! Take care.
Every patient needs a medical advocate. I have advocated for many folks myself. It’s interesting how when I am the patient, I seem to speak with less authority. Or perhaps there is a belief that medical staff can be patronizing instead of instructive. Regardless, patients must speak up for themselves. Ask questions. Insist on timely response and appointments. Keep barking up the food chain until you get results.
Not easy when you are feeling sick, vulnerable and some are alone in your misery.
Be a friend to others and ask a friend to be there for you. We are stronger together.
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3 ReactionsI am in the same situation. I have one gem of a physician in my rheumatologist. BUT, limited on time. My PCP works for the healthcare system and I am free to view my chart with test results, and message questions, but, even simple questions I have had, the nurse doesn't know as much as I do. That's frightening. MY PCP spends his allotted 15 minutes and does not answer messages if he can help it. I have watched my blood work go up and down over the past six or nine months and even I could tell something wasn't quite right. So, a few weeks ago, I had a bad fall. It had to be bad or I would never have gone to the ER. But, it was and I did. Nothing broken, thank goodness. Bad bruising on internal organs. I have been in a lot of pain already with rheumatoid arthritis and was trying to get back up on my feet with my good doctor's help. That being the case, I did not pay attention to my CAT scans that were done in the ER until two weeks ago. Imagine my surprise when the radiologist was thorough enough to mention both my Dextacardia and Scoliosis, congenital AND a new problem. As with @pmm, I worked in the Health Insurance industry as a Business Analyst for forty years and I have a good medical vocabulary. And knowledge. So, according to the radiologist's report, I have a build-up of Hemosiderosis. It is, if I understand it a build-up of iron. I am not sure which part of my upper body he meant, BUT both my PCP my rheumatologist, AND my gastroenterologist were told, by ME, that I had fallen and that they needed to read what he wrote. My PCP was not happy. My rheumatologist was shocked and told me to have my PCP or a hematologist do certain blood tests. Which irritated my PCP even more. Just let me say this, if you don't fight for yourself, the next time they don't go over your reports, or don't review your labs or radiology even from another doctor, you could find yourself in the worst-case scenario. I think doctors are pushed to limit their time with us. Well, that is too bad. I don't mind if I am going for a maintenance visit. Tell your doctor you want to understand your lab results better for your own edification and can the nurse call you with them. And the internet is a good place to start. But forums here are a good place to get support. They don't like us using Facebook but guess who helped me the most with RA? Take care and ASK anything you want to know.
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4 ReactionsHi @lipstickonmycollar (your name always puts that song in my head and a smile on my face for the day 🙃)
It’s been a while so I just wanted check in to see how you’re doing and if there’s been any updates. I know you’d been feeling so miserable and not getting much help from your doctor back in February. Have you been able to get a second opinion?
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1 ReactionThank you Patty! I am going to do it, I feel confident enough that I won’t leave till he answers my questions. Thank you so very much for all your cheers and encouragement!
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2 Reactions@lclark918 Good for you! Picture that we will be crowded into that room with you, and dare that doctor to dismiss your concerns!
A quick story. Several years ago, I had a a primary care dr who was a busy man, handling residents besides his practice. I liked his education, and how he handled my case. But he had terrible time issues. One time he forgot I was there and went off to a meeting! So, I sat down with him once, and asked, "Do you have time for me? Do you want me as a patient? You are a good doctor for me, but I will not be a pawn, and subject to non-service." I don't think anyone had ever confronted him like that before, and he really changed his tune with me. Advocating for ourselves can make a difference.
Ginger
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4 ReactionsYes! Speak up and advocate for yourself. I’ll be cheering you on from the sidelines.
You’ve got this.
Patty
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1 ReactionIt’s a learning curve! All the best – let us know please!