Could this be Porphyria????

Sorry my story is some what lengthy please read it and let me know what you think....

I am 29 years old and went to the hospital June 09 with what I thought was a heart attack or some kind of episode. My symptoms were: radiating back/ stomach and chest pains and burning, trouble breathing, throwing up, severe acid reflux, dizzy, nausous, etc.. They sent me home and said my gallbladder needed to be removed and to follow a low fat diet. I did as they said, but the next night was even worse. I went back and was admitted... saw a GI specialist and he said the gallbladder was fine and that it was most likely a hiatal hernia. They kept me a few days and did multiple tests (none of them was an endoscopy). I was sent home with Protonix and said things should get better within 6 weeks and to follow the Gerd diet. As a side note while in the hospital I was on a liquid only diet through an IV... after 5 or 6 days I was sent home, but the IV arm had become swallon and was very painful. They said this was common due to infultration of the Iv and to go home and put ice on it. I was in alot of pain, but did what they suggested. They next day I was in so much pain from the arm I could not move it, a nurse friend of mine suggested I get it looked at.... I went back to the hospital and have a sonogram done in which they discovered the entire arm had massive amounts of blood clots. This entire time my hernia was also cause great amounts of pain. I was then adimitted to the hospital again for the blood clots and was in this time close to 2 weeks. I have had only one doctor so far admit that the IV being left in too long can cause clots. They say it is rare to even get them in the arm to start with....I have had every test possible done on my entired body with hospital bills / doctors bills closing in around $100k and going.... they checked for lupus, crohons, etc. with nothing showing up.

I was on a blood thinner for 5 months -coumadin. I was finally released from it Oct 09 with the hematologist saying the clots had cleared up 50%... So I was able to start more testing since I have continued having these attacks.... I have had an endoscopy to rule out a hiatal hernia, they also ruled out ulcers and any kind of stomach problems as they did a biopsy of the stomach tissue which was fine. I also had a digestion study done which showed my food following the normal breakdown in 2 hours or less. Almost everything I eat bothers me. I have severe burping. I wake up in the night with these attacks. I have constant anxiety now because I did have an attack while driving once. Additionally I have "passing out" spells where I get so tired I cannot talk or walk, or make sense of things.

For whatever reason my episodes are much worse during menstration... also lately I randomly get what feels like sudden drops in blood sugar which have me sweating heavily and feeling as though I will pass out the sensation  normally goes away within a few minutes.  About 3 weeks ago my arms started itching and have never stopped I do not have a rash.

The GI doctors were finally stumped and referred me to a surgeon who seemed to think he could help me. Last week I had my gallbladder removed... I still have all of the same problems afterwards except now I have to watch what I eat even more it seems..... I am so frustrated and at this point am thinking it has to be something neurological or possibly an auto-immune disease. The week it originally started over a year ago now the only things that were different in my life was that I went to a water park for the first time and got a very severe sunburn. I have visited a neurologist who mentioned Porphyria to me... some kind of genetic disorder which I do have some symptoms of... but then I also have some symptoms of everything I think. I cannot express how lost I am in all of this... I am on the verge of being fired from work for missing so much due to being sick. I would really appreciate any suggestions or advice.... I used to be a healthy normal person and all of a sudden it changed.

[Stealth61]

My husband has Variegate Porphyria. Your description doesn't sound like the type of Porphyria that he has however there are other types of the disorder as well. Do you have any problems with your skin, i.e. blistering? Do you have almost red urine at times? One of the problems with porphyria is often medication will make it worse. I think a urine sample will show whether you have it however not always. In the case of Variegate Porphyria, a stool sample is more accurate.