A Milestone: A new allergist. 

My journey has been quite unexpected. Along the way though, there are points that deserve a pin on the map. Times when you choose to take a different direction, or you meet new companions. Sometimes they are only seen in hindsight, some that are immediately obvious. The last two weeks have turned things upside down. There has been a shift. A shift in how patients with MCAS are being listened to, diagnoses, how patients are being treated, and the attitude of several physicians has ‘come around’. All signs point to positive, but I will wait to see it materialize before I get too excited. 

I have rarely had positive interactions with allergists. I’ve been seeing allergists for 30+ years. With the exception of one fantastic allergist, they have been telling me that what I am feeling is “wrong’ my whole life. I don’t expect anything else than to be dismissed. I have only ever had one take me at my word. They almost always come around; I am intimately familiar with facial expression that says “Holy Crap! She was telling the truth!”. But honestly, it sucks to be treated that way over nd over again. An allergist with an open mind, who allows room to consider that I might actually be telling them the truth, I can’t ask for more. 

Across the province, patients have been scratching their heads. There seemed to be something holding the lot of them back. Vancouver is a pretty small town, and the allergists have been very good at confirming each other’s misconceptions. Perhaps it simply reached a ‘tipping point’, perhaps it is simply the universe adjusting the balance, I don’t know. I suspect I will know in good time. (I’ve been watching too much ‘Call the Midwife”- I’ve begun to resemble the diction of Sister Monica Joan… which I fear is neither illuminating nor useful… :-)  Today I met with a new allergist. It was immediately obvious that she has spoken to other local allergists about me. I wish that confidentiality existed here, but, well, gotta pick my battles. My superficial goal was to see if she would agree to prescribing me Xolair. (Xolair is an IgE blocker. It’s very good at reducing ‘classic’ allergy symptoms such as hives,  asthma and anaphylaxis.) It can cause anaphylactic reactions, and I had a doozie with it a couple of years ago. Going off of that medication made my symptoms much, much worse. The focus of the last two years of my life was to live, and then to get my system calm enough that I could start taking it again. I had no expectation of a ‘green light’ today, but it wasnt red, either. My over all goal is to establish a relationship with someone who could actually help me. There is so much information flooding in, I need help interpreting what would work for me, what will interact with what, etc. I dont need someone with the answers, I need someone who can help me figure out the answer. And frankly the whole diagnosis thing is getting kinda old. 

Its so difficult to explain what has gone on the last several years with me, health wise. She was very skeptical of several of the things I mentioned, but did not reject those ideas. Yes. I actually do have an anaphylactic reaction to dust. And yes, I can eat a few grapes every three days. But no more. She still has the “You either are allergic to something or you arent’ dogma stuck in there, but she is open to learning. And she did not tell me that what I was describing was ‘wrong’, but that it didnt make sense. Having a  physician who is able to admit “I’m not getting the whole picture here” to their patient is a wonderful step in the right direction. 

Her skeptisism eased somewhat as we spoke. She wondered if some of my symptoms that I mention during anaphylaxis are perhaps not allergic, but some other process. She said, “Well, have you had your vocal cords looked at to see if you have vocal cord dysfunction? (A reasonable question. I get laryngeal and diaphragmatic paralysis- they look almost the same at first glance). She then said “Have you seen a speech therapist maybe?” I’m a retired speech pathologist. It isn’t vocal cord dysfunction. How does one respond to that politely…? “Um, well, I did consider that. I’m trained as an SLP….” We got there.

I gave her copies of my lab results from the Mayo Clinic, and she said “Oh! The Mayo Clinic?” (Yes, thats where I went to get the tests done- it’s the only one place that DOES them). Those specialized tests (the urine metabolite tests), no matter where the sample is collected in North America, are analyzed at the Mayo Clinic. (I could almost see the “I wonder how she got those results” innuendo seed planted by other doctors go up in a puff of smoke). 

It’s such a funny place to be. I either have crazy allergies, or I’m crazy. There isn’t a lot of middle ground- it has to be one or the other. Depending on your criteria, I may well actually be the most allergic person in the world. (And I’m really not exaggerating. I’ve never heard of anyone who takes up to four doses of epi a day, either!). My allergies are completely insane. Saying so makes me sound insane. Trust me, I would much rather NOT be so unusual…. It’s not helped by the fact that I look remarkably healthy. 

My biggest fear that this allergist would, like the previous one, say that I didnt have MCAS, and that I shouldn’t be on antihistamines and mast cell stabilizers, that she would actively make my life harder. I half expected to be written off altogether. It was much, much better than I had feared. And almost as good as I could have hoped. She may not agree with my conclusions, but she believes me. There isn’t a lot of middle ground- it has to be one or the other. A very solid place to start. she didn’t call me a liar, nor say that I was nuts. She wants to read more of my information, including reports from Dr Afrin, and test results. She appears to think I might not have MCAS, but she gave no hint that she thought I was anything other than physically sick. If I expect my physician to be open, I have to expect the same of myself. Maybe there is another peice lurking under there… I am not married to having a particular diagnosis- I just want to get the medical care that I need. A hint of respect and kindness goes a long way, too. And that, I most certainly got today. 

Are you still here? Start a discussion!