Monday, January 12, 2009

A Diagnosis!!!!!!!!

I woke up this morning with my face all swollen and played hardball. I called a bunch of allergists begging for an appointment today and finally, FINALLY, I got one with a doctor in Providence.

I did about 80 down I-95 to get there in time, I was so desperate. I had a consult and wasn't even supposed to see the doctor today but when the nurse saw my face and heard that I was in the hospital 10 days ago she said she'd pull some strings so I could see the doc today.

I love this doctor! It's the first time I wasn't blown off. I've been having some serious misgivings about my primary care physician and now I KNOW that I need to change doctors (Jami -remind me to ask you who you see again). We talked for a while - he was trying to get a sense of my episodes, frequency, etc as well as family history. He did a little examination, but the swelling was so bad he didn't really need to do anything but look at me!

And then, finally! He asked me if I'd ever heard of angioedema. I had, but only through WebMD trying to figure out what the hell was wrong with me. The doc said I most likely have idiopathic angioedema. Angioedema is spontaneous swelling below the skin surface usually on the lips and around the eyes (decribes me perfectly). When it occurs spontaneously, independent of an allergic trigger, it is called Idiopathic Angioedema. So basically - I am allergic to myself! There is no cure, they can just treat the symptoms wich antihistamines, oral steroids, and epi-pen if breathing difficulty happens. Hopefully, over time, it will happen less frequently. I really hope so because I'm sick of looking like Quisimodo every week or two!

I have a condition and it's called idiopathic angioedema. I'm so happy to have an explanation! Now everyone say a little wish/prayer/whatever that this goes away on its own, okay? Thanks!


joe said...

remember when I was allergic to water and would break out in hives every time I went swimming?

Well, I still have that, but not as bad.

Does that help?

kate said...

Good morning, Amy.

A dear friend in MA sent me (in VA) your blog because last month while eating ice cream my lips and tongue swelled, and my throat partially closed. I was almost 1000 miles from home, alone in a motel, and was sorta kinda scared. When it didn't appear I was going to lose the ability to breathe, I relaxed and was at the door of the Pigeon Forge library when it opened. Like you, I researched my symptoms and discovered angioedema. Doing the "ice cube" test, I determined I'm allergic to cold. I had been eating ice cream when the attack occurred.

Following the ice cream occurrence I did some more independent tests: drinking ice water (lips and tongue tingled), hand in cold water (bright red, swollen, and so itchy I wanted to cut it off), going outside without gloves/hat (red, swollen face with white blotches--and, again, the itch).

Upon my return from FL (thankfully no cold weather there!), I saw a doctor fearing heriditary AE. He confirmed my diagnosis and prescribed Periactin for the days when I knew I'd be outside when it's cold. If I want to eat ice cream, I think a pill will be required! But I'd rather forgo the pill and, consequently, the ice cream, as I don't like taking meds. Throughout my adult life I've said that the only way anyone could get me to stop eating ice cream was to tell me it would kill me....

Think back on where you were and what you were doing when you had an outbreak. There may be a trigger that was just too strange to consider---like Joe and water, and me with ice cream.

I wish you well -- looking like Quasimodo didn't make me very happy either.