Bone marrow biopsy and/or blood tests for MGUS

And thanks for the hug!! Right back at you!!

@newfiesgirl1 If you haven't tried it, lymphatic massage may help your edema issue. That is what helped me a lot a while back. Also, I had to switch out a medication that was known to sometimes cause edema.
Ginger

Hey Ginger, Thanks for that suggestion...I'll look into that. I should mention that I do take by prescription 180mg of water pills each day. So with that being said, even with that amount of water pills being taken each day, I've still got such severe edema in my legs, or I should say mainly my right leg and quite honestly my primary care doctor has done NOTHING to find out why it is that way. The results of the ultrasound were skewed and all she said about that was we could redo the ultrasound. My primary care clinic has messed up on more than one occasion and on more than one issue with me lately so I'm seriously thinking of switching clinics altogether. Ugh....I just hate the thought of doing so tho...but I know it needs to be done, either that or I need to talk to the clinic director and see that changes are made. I don't know at this point I guess what I have the energy for.

@newfiesgirl1 The medication that was a problem for me was a blood pressure med. They switched it up with another, and there was [almost] immediate edema relief. But, I still got a local gal to do lymphatic massage on my legs, then she taught me how to do it myself. Like you, I take 80mg of diuretic twice a day. There is a link here for what Mayo Clinic has to say about edema.

One thing is being able to move around and get some exercise, just walking if that is enough for you to do! As I navigate some mobility concerns, that is proving to be difficult at times, and it shows in my fluid retention. You may find, like many of us do, that it is a fine balance each day, between diet, exercise, medications, and health concerns.
https://www.mayoclinic.org/diseases-conditions/edema/symptoms-causes/syc-20366493#:~:text=Edema%20can%20affect%20any%20part,or%20cirrhosis%20of%20the%20liver.
Ginger

Hello Ginger, With me having Fibromyalgia I have to get up and move somewhat every day or I hurt worse all over my entire body. However, my edema gets worse the more I am on my feet, even with legs wrapped in compression stockings or compression wraps. Right now my right leg/calf is SO swollen because for the past two days I've been outside doing yard work and working in my gardens. I am without a fulltime PCA right now but that will change hopefully next week when my new girl will be starting. My right calf swells to an unbelievable 19 1/2" in circumference and yet my primary doctor hasn't made it a priority to have me seen immediately by someone. I've got an appointment at the end of June to have an echo done and I've had his appointment for two months. There's no sense of urgency with these doctors and that's what concerns me is their lack of concern. Again, I don't wanna appear like a hypochondriac, but I know this is NOT normal.

What was the medication? Thank you.

This is the first time I've heard of this. I had bone biopsy and would gladly trade it for an alternative!

@alexcard The medication was amlodipine. a calcium channel blocker. I no longer take any blood pressure meds, and have kept my BP in an acceptable range! One of the common side effects of amlodipine is edema, especially around the ankles.
Ginger

I have to apologize to anyone that may have reached out and commented on any posts I have made. For whatever reason I wasn't getting notifications that anyone had responded to me until now, so again I apologize! I feel horrible! In response to this question tho, I've got a humdinger for you all and I'd like to get your opinions and feedback on what I'm about to share with you, with out sounding like a hypochondriac or even being accused of "wanting to be sick" as I have already been by some people close to me. As if anyone would WANT to be stricken with this crap right?? Ok, so I was diagnosed with MGUS by Mayo doctors in 2023, but I had a dislike for the doctor I had as I felt my concerns weren't taken seriously with respect to the diagnosis and subsequent tests, testing or lack of empathy. He was very condescending, always seemed to be in a hurry like he didn't have the time for me or I was wasting his because it was just MGUS. I was told repeatedly by him I had nothing to worry about, come back in a year. I was left with a lot of unanswered questions so I contacted Mayo and asked basically for a do over with an entirely different doctor. They did grant me that do over and in August 2024 I went back to the Mayo clinic. What I had wanted done and what I got were TWO ENTIRELY DIFFERENT THINGS!!! I had wanted all new labs, a new complete work up, like I was brand new to the facility. What I got was different doctor, looking at the same tests, she did run some tests... Some of the same ones that I had questions about with the first doctor. But because she had labs done first I couldn't discuss my concerns with her prior to them being done so I did them AGAIN. Well, guess what? She comes boppin in the room like a school girl and says, " Hi Karen, I've got some great news for you! I don't THINK you've got MGUS at all! I THINK it's your Benlysta medication for your Lupus putting the Monoclonal M protein in your body, giving it a false positive. Isn't that great news!? So we can cross that one off our problem list, what else can I help you with? EXCUSE ME? You're gonna waltz in here, announce to me, after a year has passed that I DON'T have MGUS, after a colleague of yours diagnosed me with it a year prior... say you don't THINK I've got it, but offer up NO kind of testing or let's take you off your Benlysta medication and then when we know for sure it's out of your system, let's rerun your tests just to make sure my theory is accurate. You offer nothing, but now I'm supposed to believe you?? This is unbelievable and incredulous!!!
Did I get hit over the head and is this all one really BAD dream or better yet a nightmare?
Well folks, to try and make this short... Lol... I was SO livid by the time I walked out of that room, I was seeing red. I ended up seeing a small town doctor, a wonderful Hematologist up north by me in Minnesota where I live and he told me of a test that the MAYO clinic does that can differentiate between medication and the actual Monoclonal M protein in a person's body. WAIT, WHAT??? Why didn't the 2nd boppin doctor do this test on me then, rather than just "THINKING" it, why not DO IT???
Well folks... That test came back and it showed that supposedly the Benlysta medication, which is a self administered shot I give myself once a week at home, does in fact, put the Monoclonal M protein in my body. So according to THIS doctor, I don't have MGUS. Now my question to all who have made it through this novel... And I'm sorry for this long story but you needed to hear it... Who do I believe and or what do I do from here? If I continue to question the MGUS diagnosis, here comes the hypochondriac Karen or the girl that WANTS to be sick, wants to have cancer... I can't even respond with something for that one... Or do I go about my business and feel like I'm the lucky girl and thank God each and every day for this blessing?? PLEASE share your thoughts and comments with me!! Thank you all in advance for taking the time to read my post. May God bless each and every one of you!! Hugs to all, please take good care of yourselves!!!

I’ve been through the gauntlet with doctors so I certainly empathize. I’m also a nurse and my joke is this: “ They call it a medical practice because they are practicing to get it right!” That’s my humor but it’s true.

I read up on Benlysta. Do you know some think that drug resolves MGUS? I’m not sure how peer reviewed that theory is but…if I were you, I’d put any concerns of MGUS out of my mind. With Lupus you have other things far more serious than MGUS to spend your energy on. With our limited energy in just doing life, my philosophy is to really discern what to perseverate on.

Hope you find my insights helpful.