Discussions By Condition: I cannot get a diagnosis.

No Diagnosis...Rheumy MD blew me off...

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: CincyMomOfTwo
  • July 22, 2009
  • 04:37 AM

Quick background:

I'm 31 yrs old, 3 months post-pardum.

2 years ago, symptoms started with night sweats then inflamation/pain in back and hands. Hips often feel like they could pop out of socket, occational intermitent knee pain. Positive ANA test, though not done in titres. Hip pain during intercourse and occationally during walking. These symptoms persisted for 1.25 years until I became pregnant.

During pregnancy pain and inflammation went away. Only possible symptoms during pregnancy were red, flushed face that would come and go. I also tested positive on my ANA titre during OB panel (OB tested for RH, ANA, and others due to previous symptoms). OB said we would just be careful during pregnancy incase I had AI disease; needed to meet with Rheumatologist postpardum to discuss. I experienced preterm labor and was on bedrest for 8 weeks. Only gained 16 pds. I also experienced gallbladder "sludge" which has since left with no lasting effects.

About 6 weeks postpardum (currently 13 pds under prepregnancy weight), different symptoms started popping up, starting with night sweats. Then started the joint pain and stiffness. I guess you could say I have fatigue. A nap a day is a must. The most severe in my knees, but also in my wrists, hands, and ankles. Upon waking, I am very stiff and it works itself out. The pain with getting out of chairs, up stairs, etc is almost always there. If I nap, I wake up feeling sort of frozen due to joints. Then the lovely symptom of hair loss showed up. My jaw has also been very stiff and poppy...like TMJ? I am awefully bruised up and I am also experiencing intermitint dizziness. I am aware that some of these sysptoms might overlap into a postpardum issue or they might not. Ibuprophen not even touching the pain and discomfort. Pain is pretty bad that I cringe at stairs, having problems getting down to bath daughter. Finally, gave in to see family physician for referal to rheumatologist.

Symptomatically, rheumy thought I had Lupus so we did a ton of blood tests. Went today and was told they were all negative, even the ANA titre. The rheumy basically made me feel like I was crazy but I know that at least the joint pain, hairloss, night sweats, and jaw issues are not in my head. She also made it seem like she couldn't do anything for me medicine wise, which is annoying as I made it CLEAR that I didn't want to do meds at this point as breastfeeding is important to me. I just want to know what is wrong with me so maybe I can do something right now or have a plan of actionfor the future when BF is done. The only thing that came back elevated ever so slightly was related to my liver and crystals in my urine. I am not sure all of the tests that she ran but most were related to lupus, AI diseases, RH, and then to liver and kidney function. Not that I wanted lupus or anything aweful, but the rheumy just basically wrote me off with anything she has to do with without even giving some other ideas as to what it could be. I guess I just wanted a diagnosis. I'm sort of at a loss considering I thought that your ANA can fluctuate and RH factor can be negative for some for many years. Heading back to family doctor to see what we want to do next.

Any insight would be helpful. I wanted to be able to ask knowledgable questions to get some sort of direction with family MD. PS...sorry if sort of jumbled but my thoughts right now are all over the place after the frustrating MD appt.

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