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Does Dermatographism--> Anaphylaxis/anaphylactoid = Mast Cell Disorder?


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Hi there,

A dear friend has gone into anaphylaxis several times in the past few months for little/no obvious reason. Once while at Lowes in the garden section. She has not been diagnosed with dysautomia or allergies, but has been diagnosed with panic attacks and PTDS, which is suspicious to me. Here is the oddity, her allergy testing came back unreadable, because she welts up from any poke to the skin, Her only related diagnosis is dermatographism.

Last night while on the phone, I told her about the pics I saw on dinet and she happened to scratch her arm and within minutes had welts, then local itching, which moved up her body, tachy, shallow breathing, confusion, etc. I stayed on the phone and prompted her to use HC cream on arm. After 25 mg benadryl, her breathing picked up and after 40 minutes she was ok. I was ready to have her use the epi pen and call her husband at work if her breathing was constricted. She wouldn't let me call her husband and refused to go back to ED, since she's been there multiple times and has given up on ED. I stayed with her on the phone till her husband got home. She lives in Charlotte, NC and doesn't know where to turn next. She has a local allergist, but he is at a loss. I went to the Mastocytosis website, but couldn't find reference to similar episodes. Does any of this sound familiar?

Thank you so much for your expertise and guidance.

Lyn

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First of all, let me say that I am a total newbie within this area of mast cell issues. But I wanted to at least comment. There are some mast cell disorder forums that you could find a lot of information through the members there. I would try offering up a similar post there. I understand she's in North Carolina. There is a Dr. Patricia Lugar at Duke in North Carolina. She wouldn't be available though until October at least b/c I just tried to call there for myself. She is a researcher and has an interest in this area.

Sometimes our symptoms our so life changing and upsetting that it will prompt us to driving a distance for relief and answers. If she is in that place, perhaps Virginia or Charleston, SC would be a place she might want to go. There is a Dr. Schwartz (correct me someone else if I'm wrong) in VA and a Dr. Afrin in SC.

Does she have dysautonomia or POTS did you say? Because mast cell activation can be linked to that.

Thanks for being a great friend and researching for your friend!

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I have dermatographism which has calmed down since I started MCAD meds. I am getting ready right now to travel out of town for a medical appointment, but I would recommend taking a look at the Mastocytosis Society Canada site (there is a thread there for people with POTS as well). On that site I posted an email interchange I had with Dr. Afrin - I think he is in Charleston?

Many people with MCAD have dermatographism apparently. I also have anaphylactic/toid episodes which are very much helped by Benedryl. And many people (particularly women) with mast cell disorders are first misdiagnosed with anxiety disorders - see the article on MSC called "A Thousand Faces of Mastocytosis", about gender differences in diagnosis and treatment.

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