As usual, on the eve of an important doctors appointment, I am a bundle of nerves and excitement. So, I am here writing about what is on my mind.
Em has an appointment tomorrow with a local allergist/immunologist to get started on our ‘official’ mast cell investigation.Yes, we have already determined that Em’s issues are from mast cell disease – but self diagnosing is only the beginning. We have to get testing done to get an idea on what is really going on. I fully expect the tests to be negative, which theoretically makes things a bit more complicated. It won’t be complicated if this doctor recognizes Mast Cell Activation Syndrome, which is likely what is going on if the tests are negative but the symptoms exist and they respond to mast cell treatment. If she is willing to treat Em’s symptoms with Gastrocrom, the situation will be very, very simple.
The big worry I have, and where it gets much more complicated, is that she won’t recognize MCAS and would only be willing to offer gastrocrom as a treatment if the testing is positive. To be honest, I have said a prayer or two that the testing is positive for mastocytosis. Obviously, I don’t want Em to have masto, but it would certainly be easier to get treatment for that as opposed to a condition with the same scary symptoms that nobody recognizes!
I am trying not to make assumptions about how tomorrow is going to go – either way. I have heard some great things about this doctor. A friend takes her kids to this doctor and, from what she has told me, I think this doctor is one of those rare ‘thinking’ docs who don’t mind a challenge. So, I am not going in totally blind, just mostly blind! I have a good general report but not about anything to do with mast cell disease. I have a bunch of articles that I will be taking with me to share – I just hope she is willing to look at them!
I am cautiously optimistic because I feel that the symptoms are so obvious and the basic treatment has helped so much. But, even if tomorrow is a complete failure, we have to start somewhere and a local allergist is the place to start. The visit shouldn’t be a complete loss, even if MCAS is ignored: Em does have a latex allergy that (hopefully) this doctor can treat her for. I am going to be very disappointed if we don’t at least walk out of that building with a script for an epi pen. Truth be told, I will be disappointed if we don’t walk away with a script for gastrocrom as well, but I am really trying not to get my hopes up.
I am also worried about how much allergy testing this doctor will want to do. I know Em’s issues are not allergies and I hate to put her through a bunch of pointless, expensive testing for results that I already know. She is already accusing me of trying to ‘spring’ the blood and urine tests on her – I have told her numerous times that that is where the mast cell testing begins, but she only ‘heard’ me for the first time last night. She does have a decent idea of what the actual allergy testing involves and, hating needles the way she does, is less than thrilled about the whole concept. This is one of those times where a little tough love is necessary. I know she hates needles but, at the very least, we have to do the blood and urine tests, whether she likes it or not. (Mums the word about possible bone marrow biopsy – that is on a strictly need-to-know basis and she does not need to know about that yet! With any luck at all, we will be able to avoid that test!)
I am concerned a bit about the blood test itself – between EDS and mast cell reactions, she does not do well with getting blood drawn. We do have a plan to make it easier – anti-histamines, using a butterfly needle, requesting the ‘best’ technician, and being well hydrated should make the whole process better and less traumatic.
So, tomorrow at this time I should have a very good idea of where we are on our mast cell journey. I will share what I know sometime in the next couple days. Wish us luck!