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!!!