One year into this thing I can't seem to find a doctor that seems competent or interested in MGUS -- UNTIL - it becomes a raging cancer. Look I get it, there is nothing they can do until it does something, but at the same time I can't help but think it is not outrageous for them to tell me basic info and be on my team.
First point of annoyance: I drove in to a major city to have an "in person" appointment with this doctor. This was an hour drive and I have to pay for parking. But when I went back to the examination room I was informed that the doctor would do 90% of the visit by an iPad from her office. SERIOUSLY? Of course, they didn't tell me that so they could bill for an in person visit and I wouldn't cancel it.
Second point of annoyance: the nurse or, whomever, could NOT take my blood pressure. She put the machine cuff on and it was wayyyyy too tight. I told her to take it off. Today, I have bruises. But then she tried three times on her own and couldn't do it. I suggested that they just use the reading from an office visit I had on 12/24. She said she couldn't. She tried to get the doctor to do it but I feel the doctor refused. Eventually she said she got it... what do you think it was... the exact reading from the last time. Which I find hard to believe. I was fasting on this day and fasting BP is typically lower. She got the idea when I suggested that she take the last reading. Now, that reading is on my record.
Third point of annoyance: My doctor is just like my cousin who is older bossy and talks like she just got off the boat from New Yawk. It doesn't inspire confidence.
Fourth point of annoyance: When I told her I was taking turmeric, she goes, oh for what the arthritis? NO YOU MORON.. MGUS!
First point of blinding anger: Her first topic of discussion at my hematology appointment... my colonoscopy. Ok fine but it didn't end there... she told me my polyps were "pre cancerous" and that I needed to tell my family. Um.. no.. I read the report too and only 2 of 6 were precancerous (and frankly aren't most of them), and it is NONE Of her business what I tell my family. My family hasn't listened to me about anything. Isn't it more important that I tell my brother about MGUS? The actual doctor that did the colonoscopy didn't provide any commentary just the report. But she is talking about it and my family's health care at MY appointment?
Second point of blinding anger: Her second topic of discussion was my arthritis in my back. Ok give me a break. That was an interpretation on one X-ray that I had this summer. Which I don't believe. If had had "severe" arthritis in my back don't you think I would be in pain? I have a back condition which may make X-rays hard to read... "scoliosis". So I suspect the person had never seen an X-ray before with that and read it wrong.
Third point of blinding anger: Her political views. When she made a mistake and mentioned that I need to get a colonoscopy instead of a CT scan, I corrected / clarified with her... that it was a CT scan. She said, "oh yes sorry I was up late last night watching the horrible events in DC." A reference to the protests that went on in our nations capital. Ok, fine -- everyone gets one. But then I asked her about the metal detector at work. I have gone through a radiation spewing metal detector for 17 years and I think, now that I have a precancerous condition, maybe I should see if I can avoid that. When asked... her answer was "after the events of last night I think everyone should go through metal detectors." HOW DARE SHE?? She is now making my medical decisions based on her political views. OMG! This also seemed to throw shade on me. Almost suggesting that I would be a danger. She wouldn't even discuss it with me, rudely cutting me off when I wanted to discuss it more.
Fourth point of blinding anger: I have been having a sore throat and tender external throat for a few months. At a doctor's visit in 12/24... the doctor who saw me told me to "run it by" this doctor. When I did that this doctor rudely spewed "Why?". I babbled for a moment trying not to say "I don't F** know". But obviously one of the first symptoms of lymphoma is tenderness in my throat. This idiot told me to get a humidifier (which she actually put in her write up) I have a humidifier... but at this point there was zero point discussing it with her.
She finally came in for just a second and felt my throat and lymph nodes. But that was it. As her final disgusting F** you... she changed my labs from February to March and decided she wasn't going to see me again for a year. Oh and if you think she will order ANY tests -- that are not the most basic ever -- think again. No to a bone marrow biopsy, no, to any urine tests. Just three of the 12 or so that should be run.
I was pretty stunned. She was soooo recommended my so many people. But I found her to be the WORST doctor I have ever seen. I have often believed that doctors sometimes try to get rid of patients by being rude. I believe this was, in part, some of it. As I was leaving the "nurse" mentioned that this lady was scaling down her practice. Message received. I will be on the search for a new doctor. But before I go, I do believe I am going to turn around and start bothering her. Asking her questions and calling for every little thing that comes up. Two can play at that game.
For the moment I am wondering if it might just be better to stop going to doctors during the MGUS stage and to pay for my tests at the local quest labs. If the doctor is going to refuse to order anything but blood tests... and pretty much refuse to answer questions with facts and not BS, then I probably should handle my care by myself.
