Porphyria Support Group

I new to this group and I am hoping to find any one to help me. I have suffered from acute attacks, abdominal pain, skin leisons, etc.. along with countless abdominal surgeries. I have been diagnosed with Crohn's among other things. My GI doctor recently had me test for Porphyria. After reading about the disease it is the first time I felt like this is it. They finally figured it out. Doctors have tested me for many things over YEARS and YEARS. They have diagnosed with many other diseases but this time I really had a ah ha moment. I never felt comfortable with the answers I received in the past. Here is the downer. I recently had the Prophria DNA test completed to confirm diagnosis and it is negative! It came back as unable to identify mutation and likely negative for known mutations. I am looking for guidance on where to go from here. Do I continue to pursue this diagnosis or is a negative a negative and I should start over? I also should mention my 18 year old daugther started having the same symptoms along with what I call serious episodes that I have been experiencing for years. The episodes are scary. The primary symptom during these episodes is truely epic abdominal pain which is usually followed by a period of illness of any where from days to several weeks. I welcome any advise, suggestions or hearing about any similiar experiences some of you may have had that might help us. I need to find help for me and my daughter.
Posted on 02/18/09, 08:02 pm