I could write several pages about my last appointment with the hematologist, but it would really be a waste of my time and most likely very boring for you. So I am going to keep it short. I went for my appointment in July. And, as usual, it was a big fat colossal waste of my time. Not only did I have a long wait at my appointment before actually seeing the doctor, he was completely dismissive of my symptoms and made “jokes” during my appointment.
After giving him an overview of my symptoms, including the new symptoms and high estrogen levels, he did his assessment which consisted of maybe 30 seconds of poking my arm pits, breasts, and abdomen and stating to me everything looked normal. WBC count was slightly elevated, but not as high as it had been previously last year. Sitting back down at his computer, he then tells me I “have (my name)-itis.” and that I “am the only one on the planet with my symptoms” and that I “will never get a diagnosis”. I just looked at him with a dead stare biting my tongue. He then continues and states, it “couldn’t be mast cell disease because you had a normal plasma histamine level last year.” At this point, I tried to speak up and advocate for myself by saying, “but that isn’t how mast cell disease is diagnosed or ruled…” “You do not have mast cell disease. We also tested your tryptase and it was below 20. You couldn’t possibly have mast cell disease.” At this point I start shaking my head after 2 more attempts to interject and advocate for myself politely. I’m wondering what has brought about this bold change and statement in his opinion. (Side note: this is the hematologist who suggested in 2016 that it was mast cell disease and encouraged going to a mast cell specialist in addition to another allergist despite me liking the allergist I was seeing at that time). Seeing that I am shaking my head, he then points out that I am shaking my head and he starts laughing making fun of me. “Where did you go to school?” he asks. “Where did I attend college?” I reply back. “Where did you go to college?” he asks again. I went to (blank) College and (blank) Nursing School. His eyebrows go up slightly and he acts surprised by my answer. (My answer being I attended a prestigious private liberal arts college until I changed majors and transferred to nursing school.) And I’m not saying this to brag, because I am not bragging, but this is a typical reaction when someone hears I attended (blank) College. “Really?”, he states, “oh yeah, I think you’ve told me that before.” He then goes on a rant about how I’ve been a patient of his for many years, and that the only reason he is “following” me is because “he finds it all to be interesting” my “constellation of sysmptoms” and how that is “why” he “has continued to see me as a patient”. I guess he’s forgotten about all the enlarged lymph nodes, anemia, etc. At this point, I start shaking my head again, which he points out again. I bite my tongue. He then tells me he’s going to check my pituitary gland by ordering another blood test because of the high estrogen, go to the lab, and follow back up with me in a year. I wanted to point out to him that he was a dismissive, patronizing ass and that he would see me again when Hell froze over because I wasn’t paying him to be amused, but I kept the comment to myself.
I’ve seen my PCP, Allergist, and Physician Assistant at my Rheumatologist and I’ve simply kept my summary of the appointment to “He was dismissive, and I will not be going back. He stated he ruled out mast cell disease with a plasma histamine and tryptase level.” And that is typically the end of the conversation.
I won’t go into the details of how many times I have taken in information printed from The Mastocytosis Society, and peer reviewed papers on mast cell diseases. There is NO EXCUSE for any healthcare provider that I have seen to remain ignorant. I have even taken them copies of the popular book written by a mast cell specialist. You will find it on my Goodreads profile (Look for the one about Occam). I don’t list it here because I am trying my best to remain anonymous and not draw attention to myself at least until I find REAL help. (There are other helpful books listed there as well that I recommend if you are having the same sort of health issues/ symptoms.)
I have exhausted my resources in more ways than one in trying to find a doctor. I didn’t want to go to this last hematology appointment because I knew it would lead to no where but more frustration. But I went anyway, holding out hope that this time would be different. It was insanity to expect a different result. I want to officially fire him, but I am afraid to burn bridges. The medical community is small, and to do so will only make things worse. But he deserves to be fired. No patient should ever be made to feel the way my hematologist made me feel. I used to hold this doctor in high respect and I trusted his medical opinion. That is no longer the case.
I have no idea what made my doctor jump on the “not possibly mast cell disease” train. It seems a political wind has blown this way. Truly. It’s important to note that he didn’t use the term mast cell activation syndrome. He will not use the term. Nor will my other doctors. It’s always “mast cell disease” or “mastocytosis”. There is no doubt in my mind that I have MCAS. I know I am right. I just wish I had a doctor who would diagnose it officially instead of giving the “suspected” word in front of it. My allergist has written, mast cell disease with negative tests in my chart. (But then turned around and contradicted himself this summer. Political wind?) I know because I requested to see the diagnosis in my chart at one of my appointments. Mastocytosis has also been written in my chart (2 different doctors) but of course with no evidence because they don’t have a basic understanding of how it’s diagnosed.
I have nothing good to say, so I’ll just stop my writing for now with that.