brethor9 Posted February 28, 2012 Report Share Posted February 28, 2012 Hi AllSo I am back from a very discouraging appointment with a specialist whom I thought was well versed in MCAD; apparently not Since my tryptase levels came back normal and do not therefore show mastocytosis he has deemed all of my symptoms are POTS related......in my previous appointment he diagnosed me with several forms of urticaria, dermographatism, flushing, itching, little red/brown spots appearing out of nowhere, severe bone and muscle pain etc. I dont understand why he is choosing to ignore all the clinical symptoms and relying on blood test that is only 75% accurate.....even my auto specialist believes there is a connection but doesnt know how to treat it.My question to the masties?.....am I abnormal in thinking that you can have a normal tryptase but still have MCAD with possible skin involvement?Bren Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted February 29, 2012 Report Share Posted February 29, 2012 Bren,Normal tryptase does not exclude MCAD/S. Been reading that tryptase can be a higher during flares. Tryptase over 20 is indicative of systemic mastocytosis and anything lower will get a different diagnosis. Good Luck chasing down the MCAD/S diagnosis. Lyn Quote Link to comment Share on other sites More sharing options...
issie Posted February 29, 2012 Report Share Posted February 29, 2012 The doc I saw at Mayo, AZ said that it is very hard to catch when you are in a flare. But, until they have concrete proof either with high tryptase or high methyl-histamine urine levels - they won't officially diagnosis it. He does however, believe in it. He even issued me an epi pen in case of bad reactions. Told me what the traditional ways of treating MCAD is and told me to do it. So, just because you don't have the label - doesn't mean you don't have it. If the meds help, than it's likely that your mast cells are over-reactive to histamine. Just put probable before MCAD and that's about all you can do. It's hard to catch it scientifically. I was given a script for an immediate blood draw (within one hour) and a jug to start urine collection immediately upon a flare. I've had them since - but, haven't felt like rushing out to the hospital or finding the urine collection stuff. I nearly did a few days ago, but the massive allergy meds I took pulled me out of it.Hope you feel better. Maybe the saline will help all things.Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 29, 2012 Report Share Posted February 29, 2012 My son's tryptase were also normal, but I emailed a specialist for mast cell and he said that does not rule out MCAD/S. The specialist thought we should have it checked out based on the symptoms and history I gave him. We have an appointment with the specialist in April to rule in or out MCAD. So, don't let one doctor have the final say on it.Christy Quote Link to comment Share on other sites More sharing options...
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