Chronic Illness and Mast Cells

Dumbfounded Doctor’s Appointment

Yesterday, I sat in one of my doctor’s offices for follow up for almost 3 hours.  I honestly didn’t mind waiting so long because the doctor is one of the few that I actually feel comfortable with and do not dread following up with.   My needs are always addressed in a timely manner without me having to do anything but show up, voice my concerns, answer questions, etc. In other words, I don’t leave the office feeling like I have been through a wrestling match or a fight I didn’t win. I don’t have to “beg” for care. I walk in with certain goals at my appointments, and I walk away with a treatment plan, plain and simple. This is how all doctors appointments should be, but unfortunately that’s usually not the case.  The last several weeks has been particularly low for me. I’ve been feeling worse fatigue than usual, and the reactions have been harder to manage.  Circumstances trying to find a physician has left me feeling defeated because nothing I’ve tried is working.  I really am at a loss as to what to do next.

Last fall, I thought I had finally made it to the right physician. I was referred to an allergy clinic that is supposed to specialize in mast cell disorders. I went to my appointment, but I didn’t feel great about it when I left. However, testing was ordered that I had been trying to get ordered all of 2016. To make a long story short (I’ll write about the details of the appointment later), the doctor I saw told me we would be in contact via email/portal. I thought this sounded great, and my hopes were up that I would finally get this “mast cell disease” (as my local hematologist refers to it) diagnosed. I saw this doctor, did the testing, and then nothing. No response to messages. No answers on abnormal test results. No response to my concerns that one of the test results were inaccurate due to collection issues I called about and was told by a secretary “just send it in anyway”, etc. I even tried going through a patient advocate to get my questions answered and still no response from this physician. So last week, I decided to give it one more last ditch effort and sent a message again. Four days later I got a response. A response which didn’t answer all my questions or address all the abnormal test results I asked about. Basically to sum the entire response up, I was told that “the medicines I am on are what is causing my symptoms. I should work with my doctors to come off my medicines one at a time to figure out which one is causing my symptoms.” I read this and I’m baffled thinking, “what the hell?”.  Reading between the lines, this doctor must have well wrote, “I do not want to help you.” I am on multiple antihistamines. They help. In fact, I’m not sure I would still be here if it were not for these medicines. I know without a doubt the antihistamines have improved my quality of life.  They are the only thing that is keeping me functioning.  I thought I was going to die in 2015 with a very unusual constellation of atypical symptoms until the discovery was made that antihistamines helped my symptoms.  I was treated and tested for everything under the sun, but the one thing that is wrong with me.  So I in no way can understand this latest opinion.  And I can only assume the medicines that are being referred to are my antihistamines since that is the only thing in my chart (I recently started 2 meds one for gastrointestinal issues and the other for rheumatological issues). The email even goes on to say that if my symptoms were just allergy, the antihistamines would have completely eliminated my symptoms. I just felt numb as I read these bizarre statements. The whole reason I went to this doctor was due to the fact that it is clearly not “just allergy” and my local hematologist suspects mast cell.  Apparently, I have completely fell through yet another rabbit hole.

Weeks prior to this, and what prompted the above last ditch effort, I had a follow up with my local allergist. My husband went with me to the appointment hoping this would help bring home the point that I need help because things are not being addressed that need to be addressed. My doctor told me he would consult with the mast cell specialist I saw. I left feeling like my doctor was finally going to get some information and be able to help me. Weeks later, same doctor calls to tell me results of latest testing.  Nothing earth shattering on the food allergies. Still have a primary immune deficiency being left untreated because of insurance. Then conversation changes to he hasn’t called mast cell specialist because he “doesn’t even know what to say or ask”, exact quote. This statement made me feel completely unsettled.  If my doctor doesn’t know what to ask, how am I supposed to know?  It also solidified the fact that I will not be going back to him for follow up.  Anyway…He asked if I could call myself. My response was, yes, but I really feel that he needed to consult with this physician and why. But, these points made no difference.  And I was let down once again.

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