Questions about porphyria.. Several years ago my gastro doctor suspected that I have Acute Intermittent Porphyria. He was unable to give me a diagnosis of this. I'm now having more symptoms other than just the severe abdominal pain and vomiting. I haven't had severe GI pain in awhile, but it seems I've traded the GI pain for other symptoms..In the past.....I would present to the emergency department with severe pain and vomiting usually I was on my menstrual cycle. The doctors or nurses would laugh and say never heard of someone vomiting just because of their cycle. On the times I was admitted it was b/c the tachycardia was so severe the doctors thought I would go into cardiac arrest.. The first gastro doc said I had gastroparesis and wasn't complaint and therefore it was my fault that i was still getting sick.. My history in short is hashimotos thyroid disease, eventually developed severe pancreatitis and had hundreds of gallstones gallbladder removal, had appendicitis appendix removed this time severe reaction to anesthesia stopped breathing ICU and a week in hospital, tons of hospital admissions due to gastroparesis nasal gastric tubes ect... Bladder surgery b/c of urinary retension, iron transfusions b/c of severe anemia, B-12 injections b-12 def. CT scans and MRI's b/c of symptoms that mimic MS and Lupus.. I finally came to the conclusion that maybe they are right maybe a have a mental disorder or something b/c no one can figure this out. That was several years ago now I'm a nursing student and have started having some strange symptoms and remembered that doc that thought it was AIP. The symptoms are tingling and numbness in left foot and warm sensations at night in same foot tingling in right hand and symptoms of gastroparesis and almost a psychotic state before and during menstrual cycles severe severe anxiety. I got suspect about AIP and put my urine out in the sun for a day it was a dark apple juice or tea color today several days later and I'm symptom free my urine is crystal clear and I have not changed my habits I have drank the same things to keep with my experiment.. I didn't know alcohol was a trigger and several years ago I drank two peach daiquiri"s I hit the floor in a local restaurant the abdominal pain unbearable my husband had to take me to my gastro doc and I was admitted to the hospital.. I'm sun sensitive I get a continuous itchy rash on my right hand... Once during a sudden attack of stomach pain i went to the bathroom and thought if I got in a hot shower I could relieve the pain suddenly my heart began to beat very slow and as I began to pass out I thought one last beat and this was it I'm going to meet my maker.. I came too on my shower floor and called my doc I was admitted and on a heart monitor for several days... I was recently studying I'm I nursing student and I looked up noticing something was very different as I covered one eye and then the other I realized to my horror that I couldn't see color out my right eye slowly over that night it returned I was sent to the emergency eye specialist and he said he wants me looked at again for MS I didn't at that time think to tell him about the one doctor suspecting AIP. I have also had an enlarged liver and spleen along with high ALT and AST positive ANA (speckled pattern) high c- reactive protein high sed rate negative lupus antibodies, kidney stones high white cell count ... HELP ME my heart tells me there is a monster hiding inside me waiting to kill me and know one is listening....
I am really sorry to hear about your state.Since you have so varied symptoms it is dificult to comment without examining you.Your symptoms can be suggestive of Multiple Sclerosis/Porphyria.
It requires a detailed clinical examination and thorough investigations for correct diagnosi.It might be that you are also suffering from Generalised anxiety disorder which is aggravating these symptoms.
Consider visiting a Physician for evaluation.
"Ask a Doctor" questions are answered by certified physicians and other medical professionals.
For more information about experts participating in the "Ask a Doctor" Network, please visit our
medical experts page.
You may also visit our Abdominal Pain , for moderated patient to patient support and information.
The information provided on eHealth Forum is designed to improve, not replace, the relationship between a patient and his/her own physician.
Personal consultation(s) with a qualified medical professional is the proper means for diagnosing any medical condition.