View Full Version : Lost in DX Limbo

03-14-2005, 04:31 PM
Hello, everyone.

My name's Becka, and I'll be 37 in June. Last year, I went into my doc to ask him about xrays for my feet, because they were almost constantly in pain, to the point where it was incredibly difficult for me to walk out of work at the end of each day. I was exhausted, mentally foggy, and with stiffness and muscle pain all over every morning, which would sometimes (but not always) clear up once I made it to work until around noon (I worked retail, on my feet every day). My doc, based on the radiologist's report, told me it was osteoarthritis, but classified it "mild".

Sometimes, my hair would come out in clumps when I brushed it, or leave a "tribble" in the shower drain. Each time I'd have one of those periods, it would last for a couple of weeks or so, then stop. I thought little of it, putting it down to stress (besides, I've always had very thick hair, so it was kind of easy to just ignore it). Every time one of the kids in my work area (Children's Department of a bookstore) sneezed, it seemed I'd come down with the flu as well. Again, dealing with so many little runny noses, I figured it went with the job. Eventually, in June, the constant pain, illness and fatigue got to be too much, and I quit my job.

A couple of weeks ago, I went back to the doctor to discuss the latest round of chest cold and flu-like symptoms, since I'm still getting sick alot even though I rarely go anywhere, as well as talk to him about some unholy heartburn I'd been having. While I was there, I had him run a blood test for rheumatoid arthritis, since my mother had been upset with me that I still hadn't insisted on a follow-up for the arthritis diagnosis.

Imagine my surprise when, a couple of days later, my test results were phoned to me by the nurse, who told me I'd tested negative for RA, but "positive for Lupus"! Okay.. I had no clue what that was, but never fear: the internet would tell me everything, right?

Well, sort of. After I'd read a few items, researched a bit, etc, the panic started to kick in, especially as I saw the list of criteria. After the weekend, I was finally able to corner my doc and ask him a few pointed questions, which in turn led to other tests, and more bad news.

So far, in just two weeks (roughly), they've determined that I MIGHT have Lupus (diagnosis pending, of course), but I also have an enlarged liver, enlarged spleen, bacteria infection in my lungs, viral infection in the liver,
severe GERD (already knew that, based on the sheer amount of generic Zantac I needed to get through the average day), atrophy of the duodenal tissues (awaiting a biopsy to determine the cause of that, and what it might mean), slightly elevated RBC, WBC, potassium, SED rate and hemotocrit levels, slightly lowered MCHC (whatever that is), and the flourescent staining showed both speckled and nucleolar patterns with a titer of 1:160. Of course, on top of all this, I apparently had a series of "severe apneas" during my endoscopic procedure to check out my stomach. I'm awaiting a referral to both a sleep study, and a rheumatologist.

On the one hand, it's kind of nice to think that they might be sorting out all this as quickly as they can, and that maybe.. just maybe.. I'll be able to feel a bit better, or at least not exhausted all the time. On the other, this is all coming too far too fast for me to take in, really, and playing havoc with the depression I'd been battling for 30 years now. There are times, I admit, when I just curl up on my bed and bawl my eyes out. And of course, my Mom's still stuck in that "See? You should always listen to your mother" loop.

So someone tell me.. How the heck do you people do it?? How do you manage to cope, be strong, and still keep your sense of the ridiculous? After reading through your posts here, I sometimes wonder if I'll ever be that strong again.


03-17-2005, 06:46 AM
Geez Louise, girlfriend! You got it all, didn't you? Let me guess? You're one of those people that if you're gonna do something--you're gonna do it all the way :lol:

Seriously, I was lost in dx limbo for year, too, and even though I hate having lupus, I'm glad to finally know what's wrong with me, you know?

If you ever need someone to talk to or a shoulder to cry on, I'm here.

Take care........

03-17-2005, 09:40 AM
Actually, I've been a Type A personality all my life :? When they handed me the Children's Department, I took what had been a $575,000 per year department, and in just one year, made it hit a million in sales. The StoryTime group that met twice on Tuesday and twice on Thursday every week shot up from about 15 kids in attendance at each session to a peak of 95 kids per session!! Imagine, if you will, scores of little people sitting in circles on the floor to do their crafts, glitter glue and paper snips as far as the eye could see :) I really miss that, it was incredibly fun.

Brief update, and a testament to how quickly my doctor is working on all this: I've been scheduled for an echocardiogram on March 18th (friday) at 1pm, to check for "probable inflamation around the heart". At 5:30 that afternoon, I have a wedding to attend that I RSVP'd on 4 months ago, lol, and at 10pm I have my sleep study (with the follow-up scheduled for March 31st, where they will likely have me use a CPAP machine to get the calibration set and make sure it will help me with the apnea). Still no word yet on my biopsy results, which were due back on Tuesday, so hopefully I'll hear something later today. There's a referral to a rheumatologist winging its way to me via snail mail, though it will likely be 2-3 months before I can actually get an appointment, as there's a remarkable shortage of rheumy's in the Dallas/North Texas area, apparently.

Thanks for listening to my symptom wheeze, it really helped me sort a bunch of stuff out just to post it all. Hopefully you're feeling better today :lol: