Hi Ginger,
Thank you so much for responding and for your questions and comments. I'm going to answer in order asked. The doctor I seen was a Hematologist, but I don't believe his area of focus was MGUS. He was all about statistics when he spoke to me. It drove me absolutely bonkers listening to him, because no two people are alike...but according to him, based on the statistics he was referring to about MGUS, I had nothing too worry about. He wouldn't listen to me afterwards, out of clinic, when I had questions regarding some test results that came back questionable. When I brought it to his attention he "reran" one of the tests I was questioning, which changed a couple of the other lab results in that area, which made ZERO sense to me. But it didn't change his diagnosis. It really just made me question his ability to diagnose me at all and that's when I asked to be seen again by a different Hematologist and was granted that opportunity and will be making that appointment soon. This doctor didn't want to let me show him any test results from other facilities from prior years that could possibly lead to a different outcome. He said and I quote " I think we have all the test results we need right now". He is extremely condescending when talking to me and makes a person feel silly and or stupid for asking the questions they are asking when they shouldn't be feeling that way. No question is silly or stupid. I don't care how many times I ask the same question, it deserves to be answered!! Lol. I really wish I could name him to see if anyone else had this feeling about him as a doctor but I don't want this to turn out to be a witch hunt. That's not my intention. I'm just really very grateful that they have given me another chance to be seen by another doctor who hopefully won't be anything like the first one.
Ok so you talked about a bone marrow biopsy being a common thing to do to establish a baseline right? I am in total agreement with you Ginger. I agree that some type of baseline needs to be established so that the progression or hopefully lack there of can be monitored. But then WHY WOULDN'T HE DO IT? That makes me SO angry!! I asked for different tests to be done, labs repeated and he refused to do them saying again, that we had all we needed. I left that appointment feeling empty as hell. Like I was NO closer to finding out what was wrong with me than I was when I first started. Which made me incredibly sad, angry, depressed, more stressed than I needed to be and which isn't good for me as I've got other health issues to be concerned with. I should also mention that besides MGUS I also have Lupus ('05), Fibromyalgia ('07), Lyme's('16), severe edema, interstitial lung disease, to name a few. There's more issues than that but those are the main ones I have that I deal with on an every day basis. After I came home from my appointment last year after being diagnosed with MGUS, I developed an even more severe case of edema in my right leg than I've previously had in years before. I had an ultrasound done on both legs and the findings were that it was highly possible that it was venous insufficiency. That doctor I seen that diagnosed me with MGUS didn't tell me what to look out for with respect to signs or symptoms of anything that would indicate a progression of the MGUS. So I have NO idea what to expect, look for, etc. I am COMPLETELY lost. Does it show?? I feel like I don't know if I m coming or going half the time and I hate feeling like this!! Half the time I don't feel like I'm making any sense when I talk about it to others or I feel like I'm just repeating myself. I just don't know what to do or how to ask for the help I want or if I have he right to ask for what I want. That doctor really did a number on me!! Shame on him!!