i am new here, i lurked for a few weeks til i realized what a great and supportive board this was and i felt so alone yesterday i had to post. this post is going to be long so i want to thank anyone who sticks through this. first an intro, my name is michelle, i am 25 years old and i am married to my soldier, mike. we have two kids, one 3 year old daughter named lily and i am currently 25 weeks pregnant with our son, due in june.
for 6 years no i have had bouts of painful joints, fatigue etc. i have had a facial rash for as long as i remember. i did go to the doctor about this when i was 20, he told me i was overweight (at the time i was) and depressed and he put me on antidepressants. later i was diagnosed as bi polar II though i feel this was a misdiagnosis. i have been off the meds for 4 years and have led a normal psychological life since then. anyways that was the last time i went to a doctor about my issues. a year and a half later, i got pregnant with my daughter. i had a severe subchorionic hemorrhage (bleeding from behind the placenta) for 11 weeks with my daughter. i was on complete bedrest for the first trimester and a half of my pregnancy and it was emotionally devastating.
when i found out i was pregnant in september, my mind went straight back to the nightmare that was the sch. i had been referred out to a civilian perinatologist due to the severity of the last hemorrhage. i had done some research over the internet and there was a strong study on how clotting disorders can cause the sch. so at my first visit i asked my np if she would be willing to do a basic clotting panel assay on me and she was. as an afterthought she decided to test my ana and apa levels. a week later i was in for an u/s and the u/s tech told me that there was an order for more bloodwork and it was for lupus. as soon as i heard that word my heart filled with dread. my great aunt died ultimately from her lupus. towards the end of her life it took her kidneys and blood vessels and she died after an operation for an embolism in her chest. i remember how sick she was and it freaked the crud out of me. anyways, i came to find out my ana titre was 1:320 and it was speckled and that it was concern for perinatologist.
so i went for next slew of bloodwork. when my results came back in my np called and asked if i ever had any of the diagnostic criteria for lupus, and i met 5 out of the 11. she then went over my blood work. my clotting assay was normal, my anti ro and la antibodies normal. my complement levels were normal but my c4 level was on the low side at 20. then when she read my anti ds dna it was a 26 and she stuttered. normal is a ten, mine was almost 3x higher. immediately i was referred out to the ONLY rheumatologist in my area. ironically, my np had seen him in the past for possible ra and she warned me that the appointment was going to be long but thorough.
so i met the rheumatologist after his pa diagnosed me with reynaud's phenomenon and fibromyalgia. i also have osteoarthritis in my knees, hips, hands and elbows. he went over my history and my blood work. i asked him if i had lupus and he told me to prepare myself because i had a positive lupus test. he wasn't too sure about my malar rash, he felt it was acne so i got referred out to a dermatologist who has told me that it was from the acne. he said a malar rash doesn't blanch out (in my research i have read the opposite, it does blanch out because it is essentially a pooling of blood under the skin) i have been treated for the acne for 3 months now, my face is as clear as it's ever been but guess what i still have the malar rash! if the acne was treated wouldn't have the rash went away? i also was diagnosed with tiny spider angiomas (telangiastacias) on my hands and arm.
the second time i went to the rheumatologist he told me that i clinically did not have lupus after he told me i had it, and since i was pregnant he wouldn't put me on anything. he had retested my lupus panel and my c4 level was still on the low end of normal and my anti ds dna was high at a 17. this was in december. he wanted to see me the first week in march and if i felt symptoms he would reorder my bloodwork.
fast foward to the 2nd to last week of january. i started feeling achy and tired. i also had developed several mouth sores, on my gums, cheeks and tongue. the achiness in my joints was so bad that if i crossed my legs i would cry in pain while uncrossing them. i could barely open the screw top on milk, never mind cans etc. i am 25 years old, i wasn't too far long in my pregnancy yet and i knew it wasn't that. i knew this had to be a flare up. one day the first week i felt like this i was vacuuming and all of sudden sweat began pouring out and i felt hot. i ran to the bedroom to take my temperature and it was a 100.5! everyday the pain, fatigue and fever got worse. after almost 2 weeks i was FINALLY able to get in touch with my rheumatologist and all he did was order my bloodwork. and then i waited, and waited some more to get the results. if it wasn't for my np at my perinatologist calling me yesterday i probably would have never recieved them.
last week, i started feeling a bit better. no more fever, my joints were relatively better but my heart out of nowhere would race! last tuesday morning it got so bad i called up my perinatologist and asked what they recommended. they said er so that is where i went. after 5 hours the cardiologist in the er found no structural abnormalities (he didn't do an ecg either) but he said that this type of heart anomaly goes along with the lupus flare i had described. when he called my rheumy to ask if he should rx prednisone he had to YELL at my rheumy to remind him who i was. my rheumy had no clue!
i saw my peri the day after and they redid my blood work because my np didn't like how red my rash was (she wasn't convinced my rash was just acne but she couldn't say much because her speciality is perinatology) she ordered my complete lupus panel.
i got all the results back yesterday for my first round by rheumy ordered the end of january and the round ordered last week. my levels the end of january were normal for c3 at a 135 then a 136. my c4 levels dropped from a 20 to an 18 bringing them borderline low. my peri ordered a ch50 panel which came back super low at a 49 and then my anti ds dna. in january it was a 13 and then it was negative!!!! how could it have been negative after 3 positive tests? and what does that mean for me? i do have to add that the last test was performed at a totally different lab. could this have something to do with it?
i don't have a definitive diagnosis and i was in the process of going back home (nyc) because my parents aren't convinced this rheumy is worth jack after my treatment this past month. they want me to see my aunt's rheumatologist whose specialty is lupus. but ultimately, what the heck does this negative test result mean? is it normal for the test to come back negative after so many positives? are these symptoms all in my head. how can two out of the three complement levels point to a flare but my anti ds dna is normal?!?!
i feel so alone, i was crying my eyes out. and after my less than stellar treatment from my rheumatologist this past month i feel like i am going to get doors slammed in my face from here on out. and how is it my perinatologist and np are more concerned about my "highly possible" lupus then my own rheumatologist?!
i know this was a novel, i have to thank everyone for reading this, any insight, at all would be wonderful. i don't want to feel alone anymore and i know everyone here would understand.
eta- i have also had a 24 hour urine test done because my peri was concerned about me developing pre eclampsia. she wanted a baseline done. my 24 hour urine showed i was spilling 250 mg of urine and i have protein in my urine at every doctor's visit.