Re: Acute Intermittent Porphyria

I had my first porphyria (acute intermittent) attack when I was 27, which was fifteen years ago. My first attack manifest itself as weeks of losing weight, constipation and flu-like aches and pains. This the worsened until until I couldn't walk properly and my urine went a dark red colour. I went to the hospital and because I previously had gynae problems it was assumed that it was something to do with gynae. They were going to do an exploratory operation but then my blood pressure went sky-high and so they cancelled my op and gave me medication to to lower my blood pressure. However, the medication they gave me made me worse and then they gave me more medicine, which made me worse still. This all culminated in the worse pain I have ever experienced in my life (childbirth was less painful), and then paralysis of my arms and legs. I was in hospital for two months and then for the next two years I spent about a year in hospital with multiple admissions. I have some degree of nerve damage and my balance is very shaky. My legs can give way without warning and my arms are useless if I try to raise them above my head.
Ive passed the condition onto my daughter who, thankfully, hasn't experienced any attacks yet, but she is getting to the age I was when I experienced my firs attack.
I also have recently been investigated for MS due to a variety of symptoms and my sister and just been diagnosed with it. I have been told that I more than likely have MS, which would make me even more unique than having porphyria makes me...aren't I the lucky one!! Tweet