Hi I posted this in the other link but wanted to put my story in this section to see if anyone else had any ideas or thoughts-
I don’t know where to begin- I am a 38 year old female- I delivered a baby girl 4 years ago was relatively healthy prior to it- had some complications that went undiagnosed until the end of my pregnancy but became very sick pre eclampsia possibly HELP syndrome seizures, gestational diabetes, infections, etc. After I delivered my daughter I remained hospitalized and developed high fevers – for the most part undiagnosed and thought to be an endometritis. I also developed several spinal problems and numbing and back problems and bladder failure said to be from a separate thing maybe epidural or something- not sure but they think it’s completely separate. I have been very ill and almost completely unfunctional over the last 4 years and sicker and getter worse with many many different things going on mostly worked up for multiple sclerosis which they now ruled out but they keep going back to an autoimmune disease such as lupus or a vasculitis or could it be an unidentifiable infection. I have lesions on liver assumed to be hemangiomas but it started as 1 there are now 3 or more. My lungs first had actelactasis then one or 2 nodules then more nodules then it went from one lung now there are nodules on both and they are too small to biopsy. I have coughed up blood before but the worst was about 8 months ago clumps and clumps and have several times since then. I experience really bad pain behind my right lung and now can barely breathe am very short of breath cant walk more than a few steps have to sit down between short of breath and weakness in legs. On top of that I have had urine decrease since I delivered my daughter but it kept getting worse and worse they said due to bladder- I have had blood and casts in my urine for quite some time and now even have some blood in toilet visible. They keep telling me I don’t have kidney disease because my BUN and Creatnine are fine but one nephrologist thought since I had coughing up blood, blood in urine, casts, severe flank pain, paleness that it was worth being tested for a specific lung kidney connection which is what he did. I tested positive for the anti glomerular antibody membrane. I was tested 2 more times and it was positive again. I went to visit another nephrologist since the first one wanted me to wait 6 months before they did a biopsy and the second one feels my kidneys are fine regardless of the blood and the flank pain because the ultrasound and catscan show them as normal and my bun and creatnine are normal. I have put on 55+ lbs in a month or 2 and feel so fluid filled. My rheumatologist was concerned but the nephrologist convinced her I don’t have goodpasture syndrome because of the BUN and creatnine levels were fine but another nephrologist had done 2 24 creatnine clearance tests and they showed me in stage 3 kidney disease or failure. I feel my health is progressively deteriorating I am blowing up like a balloon, my legs hurt so bad on top of numbing and my right side between my lung kidney and lower back pain is beyond what the narcotics can even dull. My rheumatologist said she doesn’t know what to do she cant find a nephrologist to do the kidney biopsy so she doesn’t know what she can do but this is a fatal disease and a few months have gone by since the first positivity test and I don’t want to wait too long- what should I do? They don’t know what to do they said most of them never see a patient in their careers with this disease because it is so rare. From my research it sounds like I have glomerularnephritis regardless of the BUN and creatnine levels- is that possible between my abnormal urine tests, lack of urine output, blood, etc? Also could the test be inaccurate and I not have the disease even if it came back 3 times positive?