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Old 08-30-2015, 08:36 AM
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mrsD mrsD is offline
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Join Date: Aug 2006
Location: Great Lakes
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15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
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I react to any injury or bug bite with alot swelling.

My throat swells up sometimes and blocks my Eustachian tube resulting in ear problems.

Much of my HAE is GI centered. I cannot tolerate fresh fruit (esp apples), or gassy vegetables like cabbage. My abdomen will swell when I have an attack, and that is once or twice a month even when I watch what I eat. (lots of pain there) When I was little I used to throw up all the time with it.

When my throat swells up my larynx get tight and strange noises come out of it (squealing, rasping and unnameable sounds), and when this happens my lungs sound clear according the doctor who checks me out closely.

I had the knee swelling, and I have a chronic left ankle that swells then goes down, and cycles. Xrays show some spurs in it. I had an IV in my hand last year for an echocardiogram test, and my hand swelled up for 2 months! When I had my c-section I was BIGGER than when I was pregnant, and both arms swelled up from the IVs.

My mouth will swell up from any numbing injection at the dentist.

I had a HUGE reaction to the ACE inhibitors, which are off the table for me now forever. Whole body swelling, burning pain, and none of my clothing would fit me.

My whole life has been huge swelling attacks with any invasive thing. Injections, bug bites, surgeries (I've only had 2 thank goodness), minor injuries like a fall or sprain, led to long term swelling. I tried contacts when I was younger but they made my corneas swell up so they are out too. The eye doctor was mystified but now I know why that failed. After my doctor went to that seminar, we did a long history of all my "attacks" and she decided on this diagnosis. Mine was present in childhood....but you can acquire it with ACE drug use. In my case the symptoms were hugely additive with the lisinopril. Took several years to build up to the massive reaction though.

There is really no treatment for this, but some people get the new injectable drugs which are ferociously expensive. I just treat the abdominal pain/spasms with medication when it comes back. I have been lucky to not have a full blown throat blockage yet, but I carry an albuterol inhaler just in case.

My ANA's are normal... I've had them tested 3 times.
I had C4 and C1-inhibitor tested last year, and they were normal then. My doctor says best to test during an episode. One of the HAE varieties has normal complement and C1 levels. I have read that there is some thought that C1 inhibitor may be present but damaged and therefore not work properly but show up in testing. But I don't know how accurate that is.

Some women have higher testosterone levels, than others and this leads to suppressing some HAE symptoms. Once those levels fall with aging, HAE symptoms may appear later in life. Also some women who use birth control pills or HRT after menopause, show the symptoms..as female hormones seem to trigger symptoms in women.
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