Diagnosis Disasters, or The Medical Bed of Procrustes

When I was in college, I was entirely dependent upon the Student Health Service at my college in Laramie for health care, which for the most part was pretty decent.  There was only one problem, however: they saw so many students for the same things over and over again that we all started blurring into the same diagnosis.    Every time I went in to see one of the university doctors for something, I always got asked the same questions over and over again, fishing for the same diagnosis:

"You don't partake in any recreational drug use, do you?"
"Um," *hack hack,*" I'm here for bronchitis."  

"Any chance you're depressed, honey?  Under a lot of stress?"
"I fell off my bike and hit my head.  What-- is that a weird cry for help or something?"

"Is there any chance you might be pregnant or have an STD?"
"For crying out loud, I sprained my freakin' ankle!  My foot is swollen, not pregnant!" 

You might laugh at that last one, but all three of these actually happened between my freshman and junior year at my undergraduate institution.  I tripped down the stairs of the Fine Arts building and sprained the hell out of my ankle, and that was the first question they asked me after I told them why I was there.  I stopped being an individual patient, but a student instead, and the only reasons female coeds ever went to Student Health apparently were for addiction, depression, pregnancy, or gonorrhea.  I often wondered what they asked the men since they obviously couldn't be pregnant. 

As it turns out, that's a human problem, not just a bad doctor problem.  It's just a part of the human condition that we don't like loose ends, so we try to find answers or resolutions to problems that fit the patterns we're used to.  Depending on who we are or how we read the patterns, we're going to find the answer that makes the most sense to us-- not necessarily the one that fits the data the best.  Everybody does this some time or another, but it's especially bad if it's the doctors doing it.

For instance, when I first started having IBS symptoms back in 2001-2002, I had to go to the emergency room for severe abdominal pain.  I sat in the emergency room for over two hours before a bleary-eyed doctor moseyed into the room, noticed my age and gender, and declared that I had an ovarian cyst so I might as well go home.  He left in under a minute.  The bastard didn't even look at my chart or even touch my abdomen to see where the pain was.  Two days later I went to Student Health and an X-ray discovered that I had some inflamed bowel and some serious backlog, and after a dose of Fleet's and a traumatizing couple of hours in the bathroom I was cured. 

When my symptoms first started getting really bad, around 2003-2004, my main problems were allergies and IBS.  When I started having joint pain on top of that, after some serious head-scratching they declared that I must have fibromyalgia.  Why?  Because

(IBS + sinus pain + joint pain) ÷ woman = fibromyalgia

I absolutely hate that diagnosis because it's the equivalent of a medical trashcan.  It's like admitting defeat: we don't have any idea what all these random symptoms are, so we're going to brand you with fibromyalgia.  Let's just throw this diagnosis on the wall like a proverbial handful of crap and see if it sticks, and that's stupid.  And it's a denigration of all those women out there who actually have fibromyalgia because it makes it so hard to trust a doctor when he says you really do have it, and because it's become their favorite diagnosis for hypochondriacs.  Those two words-- fibromyalgia and hysterical-- become synonymous.  When a woman walks into a clinic and tells her doctor she has fibromyalgia, then some start to doubt their sincerity. 

And yet, I just accepted it at first, and I find two things weird about this.  First of all, it didn't explain all my symptoms, and I knew that.  It didn't explain why I got infections at the drop of a hat or had bouts of extreme insomnia or canker sores.  And secondly, once we had the term for "it" (the whatever-it-was that was making me so sick) it amazed me at how fast that became branded to me. 

So, for three or four years I ran around as a person who had fibromyalgia, and I hated how hard that brand was to shake.  For one, when I went to my rheumatologist for the first time to get my symptoms checked out, he wasn't too impressed.  The best I can tell is because for him, the formula went

woman × ("fibromyalgia" + symptoms I can't test for) = hysterical

and he therefore treated me like I was faking it.  He didn't quite say so  much to me in the examining room, but every time he talked about my "symptoms" he'd cough a little incredulously and raise one eyebrow.  Then he asked some really offensive questions about my "pain history" that made it pretty clear he thought I was making it all up, summing it up with, "well, this is pretty hard for me to swallow, really," or something like that, and an incredulous scoff.  Then he ordered one blood test and declared he didn't need to see me again.  And, here's the funny thing:  at the time, I had already had one bout of pericarditis, inflamed bowel showing up on an ultrasound, and canker sores on top of everything else.  But, I have to wonder how much that fibromyalgia tag said "hypochondriac" to him and he didn't want to take me seriously.  You'd think an effing rheumatologist would have been able to put all that together and suspect an autoimmune condition. 

That misdiagnosis cost me a lot of time, pain and frustration in the years that followed.  For instance, I started asking them, "look, I have inflammation in my joints.  Fibromyalgia doesn't do that, right?"  And when they couldn't find any evidence of swelling (all they had was my word that my joints felt puffy) they dismissed it.  Why?  Because I had fibromyalgia, and it doesn't cause inflammation.  When my hands started going numb-- I mean really numb-- the following spring, my GP didn't know quite what to do with it because "fibromyalgia doesn't cause numbness in the hands."  So, he poked about on my fingers a bit to see if he could find the issue.

"I also don't feel like my arms fit at my sides, " I told him.  "I think I have swelling from my armpits to my elbows." 
"Which fingers go numb the most?"  He asked me, ignoring what I had just said. 
"My last two, mostly, and then sometimes my thumb and palm,"  I told him.  He frowned. 
"Carpal tunnel wouldn't cause your pinky finger to go numb," he declared.  "That would mean the problem is in your elbow." 
"Um, why would it be carpal tunnel?"  I asked. 
"Well, because you're a student and you type all the time..." 
"It's not related to everything else?!"  I asked incredulously.  He shook his head. 
"Fibromyalgia wouldn't cause numbness in the hands," he declared.  Then he decided that I had a "confusion of symptoms" (as if I couldn't decide which symptoms I had) and figured that it wasn't important until I got my story straight.  The possibility of swelling in my elbows and wrists never occurred to him, even though I told him it was there. 

So, here was another story that didn't seem to fit:

numb hands + student = carpal tunnel syndrome
because 
numb hands ≠ fibromyalgia

But the key, that swelling in my armpits and elbows, would go un-commented upon for another five years.   The next time I had numbness in my hands, it showed up in my feet as well-- tingling, and pins and needles down the inside the arch of my foot, and a loss of sensation.  I became really clumsy, and my arms didn't feel right again.  My school doctor, Dr. M., was sympathetic, and he even sent me for a nerve conductivity study.  But by the time the neurologist was able to work me in, it had already gone away.  And, obviously, nothing showed up on the study, which she only did on one arm.  She and I discussed what the numbness could be.

"It's not carpal tunnel, because there's no sign of nerve compression," she said sensibly.  "You might just have a very tight channel in your elbows and you're putting strain on the nerve when you sleep..."
"But what about the numbness in my feet?" I insisted.  "I don't sleep with my legs tucked under me like a chicken."
"If you have numbness in the feet, why didn't your doctor order a test on your leg?"  She answered back.
"Beats the hell out of me," I answered.  She gave me a very askance look, as if she wasn't sure if I was lying, but she told me to try sleeping in elbow braces to help with my hands-- and never once mentioned my feet.  

 That went on for quite awhile whenever the numbness returned.  When they suggested arm or carpal tunnel problems, I'd ask, a little bitchily, "but what the hell does that have to do with my feet going numb?"  And they'd just give me funny looks and never answer.    And in the meantime, autoimmune diseases were discussed briefly, as a side note, but not taken too seriously as long as I had that negative ANA as insurance.

The thing that changed everything was when I had a bruise the size of a walnut pop up on my face because it was a symptom that my new doctor, Dr. H., couldn't ignore.  And when she suggested that perhaps I had bumped my chin and didn't remember it, my frustration hit the roof and I snipped back at her with tears in my eyes,  "But this has happened before, dammit!"   And she stopped, and realization set in, and we discussed seriously, for the first time, that perhaps my medical history and the presence of lupus in my heredity pointed towards an autoimmune disorder.  And she's chased down every lead, no matter how unlikely, to whittle down the possibilities and refused to settle on a half-right diagnosis.  All because I walked into her office looking like an abuse victim.  And she is the reason that I kept running an ANA on my blood every eighteen months, even when I was sick of it, and I discovered I had my first positive ANA a couple of weeks ago.  

When the numbness returned this time and I told her my arms felt funny, this time she actually felt my joints (the only doctor to actually do that in five years), and she frowned.  "Your joints feel warm to me,"  she said.  "There's inflammation here."  And she poked the inside of my arm just behind my elbow, and wouldn't you know it-- my fingers went numb.

So in all this time, was there anybody who tried to figure out what was really going on before Dr. H. got moving in the right direction?  Yes-- my neurologist.  Two weeks before that disastrous appointment with the rheumatologist, I was shuffled off to a neurologist because I had debilitatingly bad facial pain which my ENT had no clue what to do with.  He listened carefully to all my symptoms, checked me extra-carefully for neurological symptoms and said, "to be honest, this isn't a problem for a neurologist.  This sounds like an inflammatory disorder."  But when enough symptoms didn't present themselves to make a good diagnosis, he sensibly refused to give me one.  At the time it bugged the hell out of me, but that, it turns out was the right answer.

So, what have I learned about all this?

1. Sometimes doctors feel hard pressed to give a diagnosis even when they're totally stumped.  Especially when they're stumped.  
2.  Some doctors diagnose by statistic rather than by the patient standing in front of them.  If your doctor isn't talking to you, personally, and taking account of your symptoms, get suspicious.  Keep dialoguing with them to make sure they're not jumping to conclusions.  
3. Just because s/he's a rheumatologist doesn't mean they're not stupid or not susceptible to problems 1 and 2.  
4. It is quite possible that being a woman will make it much harder to get a decent diagnosis of autoimmune problems.  I can't shake the feeling that at least part of the rush to judgment on fibromyalgia (and hypochondria) was the fact that I was female, and that's been a problem with doctors of both sexes.   
5. The more bitchy and combative you get during an office visit, the more likely it is you'll get labeled a hypochondriac.  
6. On the other hand, sometimes you have to get in their face to insist they take all your symptoms into consideration.   This puts you at risk for number 5, however.  
7. If you have manifestly visible symptoms like a malar rash, bruising, swelling joints, sores in your mouth or other soft spots, Raynaud's phenomenon...  they have to believe you.   Show them anything.  
8. As hard as it is, never feel like you have to have a diagnosis right away.  Because it's more important to have the right diagnosis in the end.   A bad diagnosis (like fibromyalgia) might haunt you. 

And this is the problem with autoimmune disease, isn't it?  It's so damn invisible to scientific scrutiny.  For years, the only manifest, obvious symptom I had was the bruising-- and that wasn't even the most important symptom.  My bout(s) of pericarditis have been the most troubling, but they were so idiosyncratic they were easy to attribute to something else, like exercising with a lung infection.  Since every other test they had run on me came back negative for six years and none of  my other symptoms were visible, it really pushed my doctors' credulity to the limit.

So, that's my diagnosis story up to this point.  It's been a long, excruciating process of trial and error, and I think a lot of it could have been avoided if I had been stable or had the same doctor for several years.  And I had been a man. But if I were a man, how easy would it be for a doctor to dismiss lupus as a possibility since 90% of the sufferers are women?  It bears some thinking...