Sorry I have not replied back to anyone but I have been having a pity party. All the anxiety and being so upset and afraid over the dam biopsy, I finally find the courage to go thinking I will finally have my answer. NOTHING....a big fat nothing. My biopsy only showed some abnormalities, nothing diagnostic. Yes, I am happy but......
I did not want to have AIH but knowing I am sick, knowing something is wrong I accepted this based on what the doctors said. My spleen and liver are massive, my belly is swollen ( no fluid) , I feel so out of sorts and I don't know what to think now.
The GI doctor wants me to go back to the hematology doctor, and look more into my blood for abnormalities. I have had it with all of this.
I had a positive coombs test and tested positive for porphyria. I thought I would throw that out there and see if anyone has info on this. The doctors blew it off because they ALL said it was my liver!
I also have a strong anti smooth muscle antibody showing up in my blood. Do I just dismiss this finding? I feel like I am going crazy thing about all of this.
The doctor said "well it will take some time to figure this out" I thought I was finally going to have my answer and get on with life. I feel like I am back to where I started.
So frustrated, I had to vent.