Mild Lupus...Maybe lupus....Could be Auto Immunehepatitis or ......

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 1/8/2012 5:18 PM (GMT -6)   
REALLY!!!!!!!!!!!!!!!!!!!!!  how about I have about a zillion symptoms to support Lupus and Autoimmune hepatitis and I had all of that before this surgery that was supposed to be minor, just out a week nothing to it.  I was so ill before it all happened I started to swell, I worked for my primary Care she said "that is nutritional" I told the anesth the day of surg he ordered STAT blood work but next think I woke up and my life had changed forever.  The surgery that I was supposed to have in February after a routine run of the mill gallbladder attack was stopped took me to this point where for three weeks prior to this seemingly easy surg I couldn't keep anything in or down.  I had gastric bypass 9 YEARS ago so I don't absorb but about 60% of anything I eat or drink anyway.  They got in for that little routine gallbladder surg and it was 4xs its normal size they had to remove every foot of my intestine to unknot a ginormous hernia and then found stones in my appendix which had to be removed.  However even after all of that I wasn't getting better physically, I couldn't eat drink I kept swelling and I mean swelling FOR REAL.  Well I passed gas and it was some monumental moment at the hosp and 6 days later I got sent home, only to get bigger and bigger from the waist down and I couldn't breath and the mouth problem I developed I can't quite describe and it really hasn't gone away.  I called the surg who I personally knew was going on vacation and he said to "call my PCP" who by the way was my best friend and was in Vegas but also I was a 2x on the bottom and completely emmaciated on the top.  The Ultrasound lady begged me to go  to the ER when she saw me you couldn't even get a pulse in my legs without doppler.  I was in congestive Heart Failure and had a rare malnutrition where my albumin (pre) was a 1.8 I was 2 days from dying.  I was in another 13 days being fed TPN but I had had this underlying autoimmune stuff my whole life.  My son is type 1 diab with hashimotos, my daughter has graves and polycystic ovaries, my mom has thyroid disease, and my aunt has well...had MS we are an autoimmune mess! 
So when I asked for an ANA test after I wasnt getting better after like 3 1/2 months my doctor rolled her eyes at me but it came back 1:320 I had lost over half my hair and it was just still coming out, I felt so horrible all the time barely able to stay awake while speaking most of the time, tachycardic still, joint pain that made me feel like the tin man and finally I got some raised eyebrows as like "maybe she isn't just complaining!" 
BUT with a LIFETIME of autoimmune problems personally and a family full of it I am sick of hearing "Mild Lupus" we think it is , my new very seasoned doctor said he believes I do have auto immune hep and won't believe otherwise without a biopsy.  I told him they said I didn't have it he said "how do they no did they do a biopsy?"  I have nearly EVERY symptom and a positive ANA what more do you need?  Geesh.........
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 2:23 AM (GMT -6)
There are a total of 2,974,906 posts in 326,221 threads.
View Active Threads


Who's Online
This forum has 161313 registered members. Please welcome our newest member, AlexHannah23.
329 Guest(s), 1 Registered Member(s) are currently online.  Details
JayPoppa