<https://forums.phoenixrising.me/threads/doctor-suggested-mastocytosis-anyone.5181/>
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"Hi. I went to a neurologist who is very reputated and runs a sleep disorders clinic. I showed my old sleep study and he was very interested. He started to find many abnormalities that they hadn't noticed at the public hospital where I took the sleep study.\r\n\r\nAnyway, the guy got like very interested and started asking lots of questions about my whole condition. He didn't know much about CFS but still said, let's see, you never know, you have terrible symptoms and signs and tests showing many things wrong.\r\n\r\nAnyway... he got to a point where he said that I might have MASTOCYTOSIS. He told me to go to some skin & mastocytosis specialist first and then we'd see step by step.\r\n\r\nSo, I came home and googled for Mastocytosis. And in fact it the symptoms match too in many ways, sounds like CFS and the hypersensitivity I have to everything which is not full MCS, mostly my untreatable respiratory tract mess and so on.\r\n\r\nYou can see here: http://en.wikipedia.org/wiki/Mastocytosis\r\n\r\nSo I came here and searched in the forum and I saw that it has been discussed before, but not specifically about Mastocytosis but as Histamine Intolerance: http://www.forums.aboutmecfs.org/showthread.php?1804-Histamine-intolerance-anyone-got-that\r\n\r\nSo, given that apparently having Mast Cell disease is also (as usual) common in CFS, and given that the tests for Mastocytosis are terrible (biopsies), I'd like to ask if someone has gone this route before and got tested and so on.\r\n\r\nI would appreciate any input.\r\n\r\nThanks in advance."
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