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wheely_kismet

320d

I've been diagnosed with MCAS for a few years now , for 6 years I've been diagnosed with chronic urticaria and cholinergic urticaria. I've had episodes of anaphylaxis with drs confirming anaphylaxis also and have had to stay on steroids for months. i only managed to get the MCAS diagnosed after going private . my NHS dietician talked me into seeing an immunologist at her hospital and told me he believed in MCAS and had agreed to trial omalizumab. the appointment with him was terrible, he said I don't have any of the diagnoses I mentioned above , that i had never had anaphylaxis and that epipens were overprescribed. He has seen pictures of me absolutely covered in hives, swelling of my tongue but he disregarded the swelling pictures and said that my hives look flat and that I just have POTS flushing. He will not prescribe omalizumab unless I get pictures where my hives are raised enough to "see" any more than the ones he saw so I guess I won't be getting omalizumab.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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