Unfortunately, the allergist we saw is not a big believer of mast cell activation syndrome. I was prepared for that – I knew this appointment was a roll of the dice. She does not believe Emily has mastocytosis – which is fine, because neither do I. However, I don’t think she really recognizes the possibility of mast cell activation syndrome. She seems to want to attribute the symptoms I see as mast cell disease, as separate and distinct entities. The automonic symptoms were EDS related and from deconditioning, the GI problems were maybe heartburn, the eczema is just eczema, the flushing is no big deal. I really didn’t expect to have these debilitating symptoms disregarded completely. Emily was very discouraged and ready to walk out. I kind of expected a less that miraculous visit, so I wasn’t too upset.
We don’t need allergy testing – that is a BIG relief. She ordered a blood test, which I knew was the starting point, no matter what. She was not interested in prescribing gastrocrom. I had given her up as a dead end, tbh.
Then, when we got home, my son said the doctor (herself) had called. So, I hurried up and called her back. Seems like she had a couple more ideas after we left – she is ordering a couple urine tests and wants us to keep a food diary to get a handle on Emily’s food sensitivities.
By the end of that conversation, I felt like the door was still open and I wished I had given her the articles that illustrate my position. So, I think I will drop them off at the office before our next appointment and give her a chance to look at them. I do think she is a thinking doctor and I think she would at least look at my information. She may not agree with it, but at least she will take a look.
The doctor knew a little about EDS, but didn’t use that info as a weapon – that has happened to us before! And, we when were discussing Emily’s dry eyes, she admitted she did not know that was an EDS thing. She actually said, ‘I did not know that, so my information about EDS is not as complete as I thought.’ Gotta love a doctor who can utter the phrase ‘ I did not know that’ without spontaneously combusting!
So, I have some mixed feelings about continuing with this doctor. I think she is a thinking doctor and I am willing to give her a chance on those grounds. But, she has no independent knowledge of MCAS or how to treat it and that is very discouraging. We don’t see her again until Feb so that is a long time to wait when we feel like we are just barely holding on and, if the result of the tests are negative (which I know they will be) she is not going to want to prescribe gastrocrom. At this point, everything hinges on the test results and her willingness to be open to the articles I will share with her. Also, she didn’t give us an epi pen, saying that they don’t make people with latex allergies carry them. But I think we will ask for one next time. I would feel a whole lot safer if we had one and I got the impression that perhaps it was an option, just not a requirement.
So, we got very little out of this appointment, except a little tiny ray of hope. And, I guess, that is better than none. We will keep a meticulous food diary, take pictures of every flushing episode and rash and keep a thorough record of symptoms. And hope for the best!