Hey everyone,

So I’m brand new to this. I spoke with a specialist who worked with me at NORD after I first got my diagnosis of TRAPS (auto inflammatory fever syndrome) years ago, and they suggested this as a possible diagnosis based upon my symptoms.

I’m not sure if you’re up for the laundry list of problems/symptoms I’ve been experiencing, but having looked it up and been referred to allergy specialists, I thought I’d reach out to others and see if anyone else experiences the more “weird” and atypical symptoms that I’ve been dealing with. I have been hospitalized 7 times for at least a week at a time since mid May!! But this is NOT my TRAPS! SOMETHING else is happening to me.

Has anyone else ever dealt with insane swelling in the face, neck/chin, abdomen, legs and feet? And I get low grade fevers, not related to the fevers one sees with TRAPS. Every time I get sick! And simple things like heat in the summer, exercise, too much sun, stress, or every time I try a new medication triggers bouts!!

I’ve also developed wheezing symptoms that are different feeling than my asthma... it’s more like shortness of breath with strider sounds.

I have had a ton of the more common symptoms for years without ever having heard of MCAS. But the swelling and stuff isn’t listed as a typical thing. I am NOT asking you to diagnose me... I just need to know if I’m the only one experiencing these things. Interestingly, both my son and daughter experience sooo many of the symptoms, too. My son inherited TRAPS... but my daughter has been a medical mystery for 21 years now! It’s disabled her!!

Also, are there any books on a low histamine diet?? Or website information?? Guess I better go check if this sub has a wiki... Thanks in advance for sharing your wisdom and experiences!!