Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
coffeekiss

Junior Member
Registered:
Posts: 1
 #1 
Hello, everyone! Please tell me if you have any similar stories or advice.

I became pregnant early 2016. The OBGYN did a urine test and noticed right away I had high levels of protein in my urine. I was closely monitored throughout my entire pregnancy as they thought it'd develop into pre-eclampsia. They sent me to a kidney specialist who turned me away since my protein was just about 1.2g, which is high, but not high enough to be deemed nephrotic (3g). The kidney doctor also thought it was an indicator of future pre-eclampsia, so she sent me back to the OBGYN. My blood pressure was fine and it never did turn into pre-e. I was induced at 39 weeks and baby and I were a-okay.

At my 6 week postpartum check-up with OBGYN, the protein was still there, and even more than before at about 2g. I had also developed terrible pain in my joints just weeks after having my son. It hurt so much to stand up, it hurt to walk, it hurt to carry my baby around. The pain has gotten a little less intense with time, but it is definitely still there every single day. Specifically in my elbows, knees, ankles, and the top bones of my feet, and is felt the most when I'm still for too long (sitting in the recliner while nursing the baby for a while, for example).

My OB said she thought there was something wrong and referred me to a rheumatologist. The rheumatologist did a lot of blood work which all came back pretty normal. My protein and creatinine levels were the only elevated issues. The initial bloodwork for lupus came back negative, but she says she may want to do further testing for this later to take another look? My ANA was a very low positive of 1:40. My ESR POL was 20, which is the highest of the "normal range." She had an x-ray done of my chest- everything came back normal. She sent me to my neurologist to make sure it had nothing to do with this field (I have had MS for about 3 and a half years, but it is "mild" as I've only had one episode and zero relapses.) I had my annual MRI last year for my MS in my brain and my upper spine. I have lesions in my spine, but nothing new since I was diagnosed 3 years ago. I have another one scheduled for later this year.

The neurologist says my joint pain and proteinuria has nothing to do with MS. I get sent back to the kidney doctor.

The kidney doctor initially thought I had a primary kidney issue just caught in a very early stage thanks to my pregnancy. She has since changed her mind and now feels it is secondary to "something inflammatory." She believes the inflammation is causing proteinuria (is this even possible?) and says she doesn't know what's causing it. The bloodwork from my renal panel all came back normal. I am now on Enalapril 20mg to keep the protein levels down to prevent kidney damage. She does not want to do a biopsy right now since the protein levels are not yet in the nephrotic range.

I also had her run my SPEP, UPEP, and free light chains to rule out multiple myeloma. Those all came back normal except for my kappa light chain, which is 25 (the normal values are between 3 and 19). Apparently this is common in lupus as well. I also get the false positive syphilis test.

My biggest fear is something scary and fatal like myeloma or amyloidosis, though none of the specialists seem to think it's worth looking into these things.

Any advice? Is it always this difficult to get diagnosed? Does this sound like lupus?
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,386
 #2 
Hi Coffee
Sorry this hasn't been answered for you. I am not well versed on kidney issues, as I have DLE, but wanted to welcome you.

Back in the day, a false positive syphilis test was a "criteria" fora lupus dx. My AI issue first came to light when i was pregnant with my first child in 1986 and had a positive syphilis test. My OB sent me to the CDC, who did an in depth test which determined a false positive. That was my first inkling that I may have lupus or an AI disease. After giving birth to my son in 87, I was suddenly having sun reactions.  I had a biopsy but back then they couldn't determine lupus.
Now they can and finally 5 yrs ago, I was dx'd with DLE.

Hopefully someone will respond that knows more about your questions. 
Take care


__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Sky

Active Member
Registered:
Posts: 33
 #3 
Sometimes it seems to be a merrygoround. From experience with being dx w/lupus in 1980 due to proteinuria, renal bx: possible lupus and or farconi syndrome. If you have proteinuria my "suggestion" would be to have these labs done.
DRVVT, Inhibitor anticoagulant screen, Hexagonal Phase Phospholipid, IgA, Beta 2 Glycoprotein 1-antibodies....
Most importantly::::;Renal Function Panel.
Always demand your needs if possible from your doctors.
Have not been on this message board in awhile. It's a Great Message Board.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,386
 #4 
"Have not been on this message board in awhile"

Hopefully you will be a positive contributor this time around. 

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Sky

Active Member
Registered:
Posts: 33
 #5 
I agree.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,386
 #6 
Glad to hear that.
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Previous Topic | Next Topic
Print
Reply

Quick Navigation: