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Are there many others out there who are looking at a dual-diagnosis with POTS and also Mast Cell Dysfunction?  The doctors still are not sure what to do with me- I am going back to Mayo in the Spring for a tilt-table test.  I have been also getting worked up for Carcinoid Syndrome VS MCAS.  DO any of you get facial edema with the flushing?  I am still wondering if it is all related to the Dysautonomia.  

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Hi Megan

I have the dual diagnosis of POTS and Mast Cell Activation Disorder. The POTS was the first diagnosis and mast cell diagnosis later as the symptoms became more obvious. I get Urticaria, flushing, asthma, many allergies, anaphylaxis, but no facial edema. My specialist’s view is the the mast cell disorder causes the dysautonomia, not the other way around. I agree, as since I started all the mast cell medication the POTS symptoms are much better. In terms of medication, I started on Xolair a year ago and that helps a lot, including with the POTS symptoms. I also take daily antihistamines and asthma meds. That said the mast cell symptoms are still not fully controlled, so looking to start ciclosporin next month. 

Hope you get some more definitive answers soon. 

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