Dang. Has it been a YEAR?

I've been so much in recovery mode that I've completely forgotten about disease blogging for a while.  Boy oh boy, there's a lot to catch up on!

So, I had to drop the blog for a while, as I needed time to actually get s#!t done for a change.  I'm now officially a year behind-er than when I started last fall, but on the bright side, I don't have scabies.  That's an improvement from last year.  :)

On the whole, things have been rough, but going well.  Two of my last three ANA scans have come back as positive for anti-centromere antibodies, and the titer (the measure of how much inflammation there is) was finally high enough to prove that I was having an honest-to-goodness autoimmune reaction.  No, I do not have allergies.  No, I don't need to sleep more.  I'm not (just) depressed.  This is a freakin' REAL autoimmune event, dammit.  So THERE.  

Strangely, when my rheumtologist, Dr. W., told me this last summer, I was disappointed and thrilled at the same time.  Of course I want this stupid thing to just magically disappear.  I want to eat like a normal person and not need a nap after four hours of studying.  At the same time, I felt vindicated.  After the ass-chewing I got when my illness forced me to delay my second field exam, it felt better to know for sure that I wasn't making any of this up.  that third positive ANA was the tipping point.  It meant that my doctor and I could finally talk seriously about treatment for my symptoms.  I've been on a standard dose of Plaquenil now for about three months, and I'm positive I'm seeing improvement. 

As for what we actually call this thing... that's still up in the air.  It depends on which standard you go by.  Based on my symptoms alone, my GP, the fabulous Dr. H., still wonders if I'm in a pre-lupus stage.  In some ways, that's the diagnosis I think I lean towards, too, mostly because there's a comfort in simply being to point to a name and say, "that's the bad man who punched me in the face." 

Based on my blood work, however, my rheumatologist, Dr. W., is leaning towards CREST syndrome.  For some irrational reason, that scares me more than lupus-- probably because I just haven't thought about it much.  CREST syndrome, for those who don't know, is the kinder, gentler form of scleroderma.  Patients have the same problem with hardening tissues, but it's usually limited to the hands, feet and face; other symptoms behave just like most other autoimmune diseases. That's the reason that, whenever I see Dr. W. now, he pinches my knuckles to see if the skin is getting any thicker.  So far, so good. 

The reason he's leaning toward CREST syndrome is because of those pesky anti-centromere antibodies.  You see, each autoimmune disease has a similar profile, but they usually end up with favorite parts of the cell they attack.  For CREST syndrome, usually that "signature" antibody is anti-centromere.  Patients with a consistent presence of anti-centromere antibodies usually tend to get CREST syndrome more than lupus.  Now that it's showed up on two different ANA screens, CREST syndrome looks more likely than it did before. 

But hold on-- not so fast.  Anti-centromere antibodies, it turns out, can indicate other problems as well.  You know, like Raynaud's disease.  And since I do have a problem with circulation, blue fingernails and the occasional attack of "zombie fingers," perhaps my centromere antibodies come from that instead.  And since Raynaud's is often a complication of lupus...  we're back at the drawing board. 

So, at some point, I'll tell you all the interesting things I've learned about living with AI disease, trying to balance graduate school, and being a decent wife to my very, very understanding husband.  But all that will have to come later.  

How a Bus Driver Diagnosed my Depression

The wisest person back in my hometown in the Rockies isn't on the school board, he isn't mayor, and he's not a millionaire.  His name is "AJ," and he's a bus driver for the school district.  AJ is sort of an odd duck, to be honest-- he's in his seventies, looks a little bit like an Appalachian Santa Claus, and he scrapes by on a minimum wage, more or less, working three jobs.  He moved to my home region from back east about thirty years ago.  It's hard to imagine someone with more life experience and wisdom as AJ, and he has the most amazing intuition.   It's something that has served him well as a protector of children-- he has been the reason that a lot of abusive parents and child molesters are in prison because he can tell when something is wrong, and he's the guy all the kids feel safe enough to talk to when there's trouble at home.  There are troubled kids and troublemakers who won't even talk to their teachers or police officers, but they'll just open up to AJ.  He's proof that you can't judge someone by appearance. 

So, I got to see AJ again a couple of weeks ago when I was back in town.  I was with my father down at the local ice cream joint, where AJ tends to park himself in the evenings.  He has a bad back, so he grabs a picnic bench with a burger and coke, and lets the town come to him to visit.  Back in the day when I was in high school, he was my bus driver for speech and debate; and when I was an undergraduate, AJ and I worked together during the summers, so we have a pretty good relationship.  I plunked myself down at his picnic bench to catch up, and I'm sure my face lit up when I saw him.  He's one of my favorite people.    

Anyway, as we were talking about the local gossip, how his job with the district was going, and how our friends were doing, AJ looks me in the eye and starts going off on a tangent about depression.   "You knew I have problems with chemical depression once in a while, didn't you?"  He asks me, and then he tells me the story of how he was first diagnosed: how all of a sudden he was too tired to even walk in his front door after work, and he was too tired to eat, and it was all he could do to make it to work every morning.  He told me that he went to talk to our local doctor thinking he was anemic or something, and after they chased down all the options, they decided that it was depression.  So, they put him on an antidepressant regimen, and eventually he became his old self again.  "Yep, there's no shame in realizing you have a depression problem," he said with a piercing glance in my direction.  "It's a real medical problem, and one that needs to be treated like a medical problem."  I just bobbed my head and agreed, and it never once occurred to me that he was telling that story for a reason.  I just thought it was a strange place that our conversation had wandered to. 

Well, it seems that, after years of discerning other peoples' problems with that wicked intuition of his, AJ sniffed right down to the heart of mine, too.  When I got back home in Appalachia a week later, I was so tired that literally all I did was sleep.  I slept until I needed to teach class, and then when I got home I slept some more.  At one point I went to cook dinner, and I only got as far as opening a bag of rice before I was so exhausted I couldn't even think.  So I took a nap.

It wasn't a matter of thinking evil, dark thoughts or wanting to hurt myself, or getting all emo and wanting to cry all the time.  It was a matter of being able to function on a normal level.  I felt like somebody had sucked the life out of me with a straw, and I couldn't muster the willpower to even do things I really liked to do.  So, I went to see the fabulous Dr. H to chat.  I had been having chest pains recently, too, so I was wondering if I should get screened for pericarditis again. 

Well, the fabulous Dr. H checked for the normal stuff, the EKG was clean, so there was nothing really wrong with me, physically speaking.  We started to chat about what it might be, and I blurted out, "But, Dr. H, something's wrong, I feel like I can't even walk in my front door without getting exhausted..." and I paused.  Where had I heard that before?  It was AJ, of course, and I thought to myself, oh shit, what if he's right?  I looked at her in exasperation and said, "Okay, so there's no physical cause.  Maybe... maybe I'm depressed."   She gave me a knowing look, and she reminded me about how common depression and mental fatigue are with autoimmune disease, and she sent me upstairs to chat with the psychologist.  And he decided that, yes, I'm probably depressed and need treatment. 

So, that was two weeks ago, and now I find myself on a 20 mg dose of Prozac to see what it'll do for my symptoms, and I'm chatting with a head-shrinker (actually, he's a real nice guy, and also a Dr. H) once a week to see if we can work on getting my daily routine back on the right track.  It's still to early to tell if it's going to take care of all the problems I'm having, but I'm already starting to feel a little more... level.  Like I'm not trying to walk up a hill with a sixty pound pack just getting through the day.  I think that's a pretty good start, really.

I'm still not sleeping very well, but that's a combination of some really severe dry eyes and a cramp in my gut which I've nicknamed "Conan the Obstruction" (I'm having gastroenteritis symptoms, you see, probably from the Mobic.)  But I still feel more capable of surviving through the day than I did three weeks ago.  So I think it's a start, and I think that the Prozac is probably here to stay.  Dr. H and I will talk in about another two weeks to decide if pushing the dosage up to 40 mg is a good idea... but we'll see.  

The important thing, however, is just realizing that I didn't need a shrink to diagnose me.  I needed a friend who's walked the same road.   So, I guess the moral of this story is:  if your bus driver starts talking depression, listen to him.

Fessing up

It's such a hard decision, isn't it?  What do I tell my family?  When do I tell my family?  And whom?  

Well, as it turns out, I spent some time with my family a few weeks ago, and I had decided I was not going to tell them a damn thing until I had something concrete to tell them.  The way I figured it, there was no reason to tell them about the positive ANA until there was something more to go with it.

A lot of that decision has to do with family history.  My great uncle, my maternal grandfather's little brother, died of lupus about three or for years before I was born.  Great-Uncle "Lewis," as I'll call him, was always sort of the family dark secret because nobody wanted to talk about him.  I guess it was a sore subject, but I just remember snippets of conversation as I was a child about, "Well, then there was what happened to Uncle Lou.  But we don't talk about that."

Well, I decided a long, long time ago that my grandfather (who is now 87 and still a mean old bastard) wasn't going to know a damn thing about whether or not I had lupus-- not because I don't want him to feel bad (after all, if it's genetic, he's the carrier) but because the last thing I want is for that nasty, manipulative old jerk to have a reason to feel  sorry for himself and try to milk some sympathy.  He's a pro at it.  (And if it seems like I'm being hard on him...  don't  give him any sympathy.  He's one of the most violent, abusive people I've ever met.  Just 'cause he's old doesn't mean he got any sweeter.)

Okay, so my Grandpa "Prue" was sitting at his kitchen table while my mother, aunt and I helped pack him up to move him into a seniors apartment complex while my mother and aunt start gossiping.  Eventually the conversation turns to me, and I cringe.

"So, how's your health lately, honey?"  My mom asks innocently as she tapes up a box. "Still having sinus problems?"  I just grunt non-committally.  I don't want to have this discussion.  My aunt, who is a surgical nurse, picks up the conversation.
"Yeah, Ann-Marie.  Have they run any more blood tests on you?  You know, to check for immune stuff."  I just grunt again.  I look over at my grandfather, who perked up on the word "immune,"  and I cringe. 
"You know, have that run that blood test again, that ANA?"  She asks.  "Or, what about checking your complement levels?  I saw something on that when I was watching the TV a few weeks ago..."
"I was wondering if your swollen ankles was related," my mother pitches in.  "You know, to all the other stuff that's going on."   
"Oh, you mean like that heart condition?  Sure sounds like auto-immune stuff, doesn't it, Kay?" 

 My mother and aunt mosey down to the basement as they keep talking, and I look at my grandfather, who looks absolutely stricken.  Did he make the connection between me and Lou?  I wonder. He sighs deeply with watery eyes and says, "Oh, hell."  Enough was enough. 

What could I do?  I tramped after them down the stairs, locked them in a bedroom, and said, "Look, if I tell you what's going on will you both just shut the hell up about my health around Grandpa?"  and I came clean.  I told them about the positive ANA and the weird lupus antibody test, and that it's pretty obvious that I have lupus and can't get a positive diagnosis, and that was that. 

It was strangely easier than I thought-- I just needed clear, immediate motivation.   And a dysfunctional family.

Diagnosis Jitters

Now that the clock is ticking down on my appointment with the rheumatologist now that the fabulous Dr. H has sent my referral, I've been trying to think through what's going to happen next week when I meet with this new guy, whom the fabulous Dr. H says is really damn good.  He's obviously going to want to run more tests, as I have not had my complement levels or anything like that done.  But will he go ahead and tell me that I have SLE?  That's the question.  I've spent a lot of time over the last few days trying to figure that out.  

Okay, so the American College of Rheumatology set up eleven criteria for diagnosing someone with SLE.  Usually, depending on which ones you have, you only need four for your doctor to make the diagnosis: 

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

So, in general, you only need four, and you should have more than one symptom at a time, if I understand things correctly, and some symptoms are more symptomatic than others.  Which ones have I had?

4.  Mouth or nose ulcers: usually painless
5.  Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion.
6.  Cardio-pulmonary involvement
11.  Antinuclear antibodies (ANA)

 But those are the only ones I know I've had without any other explanation.  To be honest, I've had #9,  a funny liver enzyme test (while I was having gall bladder attacks) and I had #8,  protein in my urine (when I had the worst bladder infection in the world.)  Both of those, however, might have a perfectly logical explanation, as listed before.    

In addition, I have been treated 2-3 times for what everyone has assumed were patches of ringworm on my forearms.  As it turns out, those patches look a LOT like discoid lesions, and we treated them with steroid cream and they went away.  So, have I had symptom #2?  Maybe. 

So, it really is a judgment call.  I can't tell what my rheumatologist is going to decide based on my chart and if he thinks my canker sores are enough to count as a symptom.  It's going to come down to the bloodwork, I think, and what he makes of that weird lupus antibody test I had.  It didn't come back positive for any of the hallmark antibodies mentioned in #10.  But I did have anti-centromere antibodies. 

So much for trying to out-diagnose the rheumatologist.  I'm just going to have to sit tight and hear what he says. 

Medical Spin-The-Bottle

One of the funny (funny weird, not funny ha-ha) things about lupus is that the individual symptoms could be absolutely anything.  Come on-- who gets a mouth full of canker sores and gasps, "Ohmigosh!  I might have lupus!"?   That's just not how this stupid disease works.  It doesn't like to be flashy and unique.  It wants to fit in with the rest of the disease crowd. 

So, because of that, one's symptoms are extremely vague and could be anything to your doctor, too.  It's only when you sort of smash everything together does a lupus diagnosis start to make more sense. 

So, just for funsies, here's a list of everything I've been told might be the source of my sufferings.   It's a pretty interesting list, for a lot of reasons, but mostly because it's frickin' long. Enjoy! 

From 2001 to 2010, I’ve been told I might have or have been tested for the following:

Severe allergies
Behcet’s Disease
Cancer
Carpal tunnel syndrome
Celiac Disease
Chronic sinusitis
Crohn’s Disease
Depression
Diverticulitis
Endometriosis
Fibromyalgia
Folliculitis
Heart attack
HIV
Irritable Bowel Syndrome
Lyme Disease
MS
Ovarian cysts
Pericarditis
A platelet disorder
Rheumatoid Arthritis (w/ intestinal involvement)
Ringworm
Syphilis
Thrush/candidasis

Oh, my, this is a lot of junk.  This is the reason I stopped believing anything my doctor told me sometime in 2007.   How long is your spin-the-bottle list? 

How well does your doctor know ANA testing?

One of the things I've figured out over the last five years is that most general practitioners don't see autoimmune disease enough to really be up on what the testing means.  I've had an ANA test at least four times, and I was told different things at least three times.  So, one important thing, I've discovered, is knowing the facts about autoimmune testing for yourself so that you know what your doctors are doing and what the results mean.  So, here's a little recounting of my own ANA testing saga to give you a point of comparison!

When I was first tested for lupus, I suppose it was about six years ago with the first year of absolute hell back in 2004.  I didn't have a regular, consistent doctor at that time, so I got bounced about a little bit between three doctors that worked in the same practice.  When I was tested for lupus, this doctor also tested me for Lyme Disease, HIV, and an rheumatoid arthritis, as I remember.  I asked him what the test meant.

"Well,"  he said, "We just want to check.  And if the ANA is negative, then we don't need to worry about lupus."  So, when the test came back negative, I took him at his word.  That meant I didn't have lupus.  I didn't have to worry about lupus.  And we were both wrong.

In reality, what he probably should have said was that we didn't have to worry about lupus then.  Just because you have a negative ANA doesn't mean that autoimmune disease is off the table.  I read somewhere once that it takes about ten years for a positive lupus diagnosis-- and that' s a long time to have a negative ANA.

Then, back in 2006, I finally had another flareup of symptoms and I talked to my first doctor at Student Health, Dr. M, about everything that was going on.  I was getting frustrated.

"Really, this sounds autoimmune, and we should check to be sure,"  he said.  "I'd really like to run an ANA on you to check for lupus..."

"But I've already been tested once already!"  I whined in my desperate, squeaky voice.  I had really invested a lot of emotional importance in that first negative test.  Dr. M, however, shook his head.

"You can have a positive ANA later even if the first one is negative," he said.  "If you're clear in a couple separate tests over at least two years, then I think we can put that possibility aside."  So, I let him draw blood, it came back negative, and once again I was safe to assume that I didn't have lupus.

He was probably quoting something official about lupus testing, but for me it gave me a false sense of security, and I promptly went into denial.  I did not have lupus, I would emphatically assert.  And I had two clean ANAs to prove it. 

So, about a year and a half later, when I walked into my new doctor's office at Student Health, the fabulous Dr. H., she once again wanted to test me for lupus with an ANA.  Naturally, I was a little nonplussed, but she could explain things much more coherently for me, I think because I'm her second or third patient to go through this process.  "It takes anywhere from 5 to 10 years to get a positive lupus diagnosis," she explained, "and 95% of lupus patients will eventually have a positive ANA.  That means we need to keep testing regularly to check until we know for sure your problems are from something else."  When I asked her what that ANA would mean, she told me, "Even if the test is positive this time, don't panic.  Just because you have a positive ANA won't necessarily mean you have lupus.  But you almost have to have a positive ANA to be diagnosed with it."

So, that's the reason that I was tested two more times, and the fourth time I had that positive ANA.  And, if I had stuck with first explanation of the process I received, I might never have gotten tested again unless I had had a doctor who knew the process better than my first doctor.

So, it seems that all doctors get the same training, but they interpret it differently and probably never have to counsel many patients on the process.  And, for a disease as rare as autoimmune diseases generally are, that's to be expected.  We're expecting general practitioners to be the watchdogs for problems that are really in the realm of specialists.

So, don't be surprised if you hear a lot of different things about lupus as you go through the process.  It doesn't hurt to check up online from credible sources about what your tests are, and especially what they mean.

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...