Story about Porphyria .

Because I'm a Woman...

Dec 27, 2017

By: Dayle


I discovered sensitivity to fluoroquinolones after being incorrectly prescribed Cirpro for a basic UTI in 2014 and felt strange ever since. In 2015, I decided to go on a high protein low carb diet to get healthy. Oct 2016 I was hospitalized for a seizure brought on by severe hyponatremia that nearly resulted in death. Afterwards, I experienced cyclical spells of non-specific abdominal pain, nausea, depression, and fatigue every month along with abnormal liver values for bi-weekly blood tests. I saw a nephrologist who said I was 100% recovered. My PCP assured me I was fine despite the abnormalities and thought that the abdominal pain was tied to PMS despite the fact I told him I'd never experienced anything like this in my life. I was hospitalized again in July 2017 for severe constipation and mild hyponatremia. I had all diagnostics run on my thyroid, liver, CT scan, abdominal x-rays, ultrasounds, colonoscopy, etc. and no sure cause was found. My PCP finally referred me to a GI doc and a hematologist. I researched "blood conditions" myself and found out about porphyria. I asked my GI doc to run specific tests and preliminary tests showed potential. Corroborating with my hematologist, we did several more tests and I now have the diagnosis of an acute porphyria with a prognosis of AIP. Since my suspicions of porphyria, I change my lifestyle. I switched to a high carb diet and swore of alcohol. I still get small attacks right before menses, but I seem to be able to manage my symptoms so long as I make sure to never skip a snack or meal.

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