In the last 3 years I have exprienced blood in my urine on 5 occations. I have been to a Urologist, Nephrologist and now a Rheumatologist. No one seems to know what is wrong with me because I have had no other symtoms. However, my ANA was positive as well as my double strand DNA - they have also found kidney cast cells in my urine as well. Each doctor just wants to send me to another doctor. Some think I have Lupus, others disagree but have no answers because my health is well. Has anyone experienced something similar? Im tired of getting shuffled around.
Thanks for replying. It has been very frustrating -- seeing all of these doctors and not getting any answers.
Right now I have 10-25 RBCs in my urine when the norm is 0-2. I also have hemoglobin present 4+ (whatever that means). Until I did a 24 hour urine collection that was it. I still have no other symtoms and I feel great. But the 24-hour results showed that my total volume protein was 2250, when it should be between 600-1600ml/24hr. And the protein was 182 when it should be 0-150mg/24hr.
Looks like I will be getting a kidney biopsy next even though I don't want one.
Has anyone had a biopsy in correlation to Lupus? I'm scared and sometimes I just don't want to go to the doctors anymore -- until I start to feel sick.
Your protein is not that bad; you may be able to wait on the kidney biopsy. Eventually you will probably have to do it but I don't see the rush. They should just monitor you for the blood and the proteinuria at this point. The main thing is to keep an eye on your kidney function too. How is your BP?
About the kidney biopsy. Yeah, it's no fun but it's very quick. Be prepared for the fact that they have to get in there 3 or more times to be able to get enough of a biopsy- and it is a very uncomfortable sensation, like someone reaching in and messing with your insides-which is exactly what they're doing! If they offer you valium take it, that will help (if I ever have to do it again that's what I'll do!). Once it's done you will have to lay on your back and not get up for 6 hours. That was the hardest part for me. At first you don't want to get up, but after 3-4 hours you start to feel really sore from laying in one place. After 6 hours you can get up to go to the bathroom, but it's still pretty hard to get around for about 24 hours. It takes about 2 weeks to recover and about a month to be completely back to normal. The results can take up to 6 weeks to come back, and sometimes they are inconclusive. In my case, I had high BP, proteinuria of 3.5 grams/24 hour, and persistent hematuria. The biopsy just said "basement membrane abnormality" and trace IgA nephropathy. In other words, they don't really know yet. They keep saying it's heriditary but no one else in my immediate family has it- alot of kidney disease initially presents this way though. So, I'll probably have another biopsy sometime in the (hopefully faraway) future! I hope this helps to know that your proteinuria is not that bad. Just keep monitoring it!
Thanks for the reassuring words. I am going to wait on the biopsy for now and take a break from visting doctors. It has stressed me out and I want to just enjoy life as it is now because I feel great! We always take that for granted. I don't know when I won't be able to say that anymore -- and I don't want to think about it.
I truely believe that positive thinking has something to do with the bigger picture.
I know what to look for and hopefully I will have some time before I have to worry about getting the biopsy and lab results.