Monday, March 7, 2011

How Is Everyone?

I haven't heard from some of you in a while and was wondering how everyone's doing!?! Feel free to comment about what troubles you are experiencing. By posting your symptoms or what you aren't sure is porph related or not, we all can learn!

Sending love!


  1. Glad you are feeling better! I remember a post you did about swelling between your legs at thigh level. I have some strange swollen places: a swollen area just above my left wrist; a swollen area just above my left ankle, on the inside of my leg. They are sort of egg shaped, very subtle but tender to the touch. I am wondering if anyone else with porphyria has this; i.e., is it porphyria related? I would ask my doctor but he wouldn't know.

  2. Hi Annie. My swelling was very generalized, which doesn't sounds like what you are experiencing. How long have you had the swelling? Does it get better with any treatment?

  3. Having had acute intermittent porphyria diagnosed about 17 years ago, I have personally never experienced swollen areas as a sympton...although I do realise there are several types of porphyria and do not know symptoms of them all. Main symptoms for AIP are painful stomach cramps and pins and needles feeling on the body between the knees and the elbows (known as Victorian Bathing Costume syndrome as it covers the same area). I dont miss meals (because that could set off an attack) and I am careful of any medications as these can also set off an attack (full list to avoid on many websites). Taking the wrong medicine before diagnosis was what resulted in a major attack....complete paralysis of arms and shoulders...stopped eating, lost abouot 4 stone and took 6 weeks in hospital and 6 months physio to recover fully. Since then absolutely no trouble whatsoever. Would be interested to know what typy of porphyria you have.