Discussions By Condition: I cannot get a diagnosis.

Question about porphyria

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: buggysmom
  • March 12, 2008
  • 05:26 PM

WOW! I read some of the links about this, and my god, does this fit me! I began when I was 16 and pregnant..horrible pain (I say now that I would rather go through labor again with no meds, than to have this pain!). It has happened, I would guess, another 10 times since then. I have 3 children, and in all three pregnancies, these "attacks" happened in the 7-10th weeks, and again in my early 3ed trimesters. It has happened probably another 4 or 5 times since then. The last time that I went to the ER, I begged the Dr to just give me a shot (since I seems like if it is enough to take the edge off and I can sleep, it goes away), and the ***k refused to give me ANYTHING for almost 3 hours, until he got some results back. URRG. He finally gave me a shot and I was able to go to sleep, and the next morning, it had went away for the most part, with just the muscle pain from the vomiting. Everytime that this has happened, I am told that it is just bad gas, or that it is gastritis. NEVER has anything ever came back on blood work, Xrays, or the one urine sample that they take.

My question is, since I have not had an "attack" in almost 2 years, can the test me for this, or am I going to have to wait until I have an attack again?

Reply Flag this Discussion

3 Replies:

  • Go to the support groups at yahoo and ask the folks that question... you don't need a dx confirmed to join. If you have all the symtoms and think you probably could have it.... it would be helpful to join and learn. I don't know how to answer the questyion for you; most people get dxd during an attack or a family screening (after a family member gets dxd). I will look for some testing information for you. WOW! I read some of the links about this, and my god, does this fit me! I began when I was 16 and pregnant..horrible pain (I say now that I would rather go through labor again with no meds, than to have this pain!). It has happened, I would guess, another 10 times since then. I have 3 children, and in all three pregnancies, these "attacks" happened in the 7-10th weeks, and again in my early 3ed trimesters. It has happened probably another 4 or 5 times since then. The last time that I went to the ER, I begged the Dr to just give me a shot (since I seems like if it is enough to take the edge off and I can sleep, it goes away), and the ***k refused to give me ANYTHING for almost 3 hours, until he got some results back. URRG. He finally gave me a shot and I was able to go to sleep, and the next morning, it had went away for the most part, with just the muscle pain from the vomiting. Everytime that this has happened, I am told that it is just bad gas, or that it is gastritis. NEVER has anything ever came back on blood work, Xrays, or the one urine sample that they take. My question is, since I have not had an "attack" in almost 2 years, can the test me for this, or am I going to have to wait until I have an attack again?
    TaylorDeelwithit 382 Replies Flag this Response
  • go to the american porphyria foundation web site. Also, Manfred Doss has collected mass amounts of research. another one to check out is Disorders of Porphyrin Metabolism by Moore, Michael R. .;
    Anonymous 42789 Replies Flag this Response
  • WOW! I read some of the links about this, and my god, does this fit me! I began when I was 16 and pregnant..horrible pain (I say now that I would rather go through labor again with no meds, than to have this pain!). It has happened, I would guess, another 10 times since then. I have 3 children, and in all three pregnancies, these "attacks" happened in the 7-10th weeks, and again in my early 3ed trimesters. It has happened probably another 4 or 5 times since then. The last time that I went to the ER, I begged the Dr to just give me a shot (since I seems like if it is enough to take the edge off and I can sleep, it goes away), and the ***k refused to give me ANYTHING for almost 3 hours, until he got some results back. URRG. He finally gave me a shot and I was able to go to sleep, and the next morning, it had went away for the most part, with just the muscle pain from the vomiting. Everytime that this has happened, I am told that it is just bad gas, or that it is gastritis. NEVER has anything ever came back on blood work, Xrays, or the one urine sample that they take. My question is, since I have not had an "attack" in almost 2 years, can the test me for this, or am I going to have to wait until I have an attack again? the test for porphyria is a 24 hr delta aminolevulinic acid urine test, this test tests for every known form of porphyria, I know cause I had this test myself, luckly it was negative, unfortunitly i still dont know what i have. best of luck
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.