Acute Intermittent Porphyria

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Acute Intermittent Porphyria is a metabolic disorder, which is inherited from one or both parents.

The reason I'm so interested in this is because of my decades-long quest to find out why I have "attacks" during my menstrual periods. Particularly the last 8 years since I went off "the pill" have been awful and all doctors keep telling me it is a digestive problem not endometriosis. I have never been tested for endo, and was just about to call the doc and talk to her about it when I found out about this other thing called porphyria (or more specifically, AIP acute intermittent porphyria). Below are some links, and most of you have heard my story before about how I have seizure-like episodes with my period and get really, really sick (vomiting, diarrhea, extreme abdominal leg and back pain) plus I have many peripheral neuropathies and chronic pain throughout the month. Reading some of the links of "patient stories" you will see, as I did, that a lot of these women sound exactly like me, with the exception that I've never been hospitalized although I could have been, I just always refused to do it.

My mother has often had similar type of attacks, although she has not menstruated since I was born her attacks have caused seizures and hospitalization countless times, and they are always digestive problems with extreme back and leg pain. Even just last week after we ate lunch she had an attack and I had to sit with her while she moaned in pain but insisted "nothing" was wrong. She also landed in the hospital 6 times from a severe reaction to Actonel which she was prescribed for osteoporosis after she broke her hip. The reaction to the Actonel was identical to a porphyria attack.

In addition, both my mother and I are very fair-skinned and extremely sensitive to the sun.

Many women with AIP are treated as if (yep) "it's all in your head".

The only way to test for porphyria is to take a urine test WHILE an attack is happening. Otherwise, the porphyrins sometimes do not appear during remissions.

Porphyria is often misdiagnosed as multiple sclerosis, lupus, endometriosis and multiple chemical sensitivity, among other mimicker illnesses.

People with AIP often have anemia. I have a hereditary form of anemia, so it might make sense that this would be somehow connected.

AIP is triggered by "the four M's": medication, malnutrition, maladies and MENSTRUATION.

Most AIP patients are extremely medicine-and- chemical sensitive. Many pharmaceuticals can cause an attack of AIP including OTC meds.