Reply To: Looking for answers- doctors making me feel like I am crazy

June 5, 2012 at 8:04 pm

love2run- good luck with everything.. gosh all the testing and waiting is SO hard.. this is all so hard, but just waiting for someone to finally actually help is tough! As far as the ANA goes I have always had positive ones, the lowest a 1:80, the worse 1:860 or 1:640 (can’t remember).. My sojgrens markers were elevated one time, negative another and I think everything else was negative.. the lupus “panel” was all negative twice.. My LP was normal one time (upper limit of normal protein the first time). Second time I had meningitis (aseptic) from the IVIG and the protein was elevated – they weren’t sure if the meningitis threw this off or not, as the protein was over 100 and I was most symptomatic at that time too (when I was admitted into the hospital). My GI issues were basically malabsorption/loose stools – like 30 a day ugh.. I felt like I was starving to death i was SOOOOOO Hungry like at the beginning of pregnancy ALL THE TIME.. I ate NONSTOP, even in the middle of the night – huge meals (strange huh?) I am now eating gluten free for over a year due to all of this- the IVIG fixed that issue thank God! Urine issues – I had retention and incontinence.. no fun!
I think I saw 5 or 6 outpatient Neuros before getting the help- skin biopsy apparently sealed the deal.. I did wait too long though and coudln’t breath well for over a week and was choking on food and liquids from swallowing issues when I was admitted into the hospital. I can’t tell you how many times I was asked if I was “Stressed out” being a full time working mom of two.. i just wanted to scream- You people are stressing me out!! Good luck!!! We’ll be thinking about ya!!!