Muscle weakness may occur during a severe attack due to the fact that all symptoms of AIP appear to result from effects on peripheral nerves, the nerves in the abdomen, or the central nervous system. Leg cramps, muscle spasms, and stomach cramps usually originate from this area. All the spasms may bring on another little symptom: petechia. Petechia are tiny strawberry red blood dots. These are most common on the trunk of the body and usually caused by all the stress from the spasms in the abdominal area. One physician even told my Mom it might indicate a "serious condition." As if AIP wasn't serious?
What's so insidious about AIP is that it is truly intermittent. You may be fine for months, then WHAM, a severe attack will hit you. Or you may slowly slide into the symptoms until one day you just can't get out of bed. Everyone differs. Since more women than men inherit AIP it is common for other women family members who don't even know about AIP to share these symptoms. Just ask around at the next family gathering and you will be surprised who routinely suffers from these symptoms. Alot of women simply put it off as PMS.
Which brings us to testing. The UTMB facility in Galveston, Texas, offers a great testing program. The research center http://www2.utmb.edu/gcrc/ is headed by Dr. Karl Anderson, a renowned porphyria specialist. Patients can enroll in the study and be treated at a clinic near their home or at the research center at UTMB. I personally have spent a weekend at UTMB being tested and it is worth the trip to put your suspicions to rest. One give away to porphyria is that during an attack the urine will turn dark. Testing begins there. They collect every drop of your urine for 24 hours so you must spend at least one night. The urine must not be subjected to light, so you have to keep the bathroom light off until you are sure they have collected the specimen. This was the strangest little vacation my sister and I have ever shared.
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