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?
Wednesday, June 30, 2010
Saturday, June 26, 2010
Life is Swell
Ten days ago, I came back from a weekend of watching roller derby to realize that I couldn’t see my Achilles tendon in the back of my ankles. Instead, my ankle was a smooth plain of shiny skin from the back of my foot to my ankle bone. Two days later, my ankle was the diameter of an orange and it really hurt to walk. I poked my finger into the swelling, and my pinky sunk in about a quarter of an inch into the rubbery flesh. My elbows hurt too much to even carry a grocery sack in the crook of my arm.
Since then, I’ve been trying to use NSAIDs to take care of the pain and swelling I’m experiencing, and with very limited success. I had already been on ibuprofen for a couple of weeks before that, but for some reason it’s stopped working. The fabulous Dr. H has therefore put me on Mobic to see how well it keeps down the inflammation. I’m out of town for three weeks visiting family, however, so changing prescriptions and whatnot will be a pain if this doesn’t really work.
On the whole, it’s slightly better than the ibuprofen. The swelling had been a lot better for the last few days, but today my forearms are all achy and my ankles are puffed out like a marshmallow again. It’s still not as bad as before I started the Mobic… but it’s not great, either. I have to give this a couple more weeks to see how I do before I can pronounce judgment.
But this whole swollen joints thing bothers me a lot, and I there’s a couple of reasons why it does so. First of all, it’s the first hallmark, visible symptom of lupus I’ve had. Sure, I’ve had the joint pain and numbness before, and I’ve had pericarditis, but it’s not like other people could actually see that. My puffy ankles are pretty obvious if I wear sandals (so I haven’t been,) and with everything else going on the ankles might be enough to clue them in. Secondly, this just feels like it’s putting the final few nails in the lupus coffin and now I can’t escape. After all, everybody likes to think that maybe, just maybe they’ll escape such a lousy diagnosis, right? I’m really no different, and my puffy joints are a symptom that I can’t ignore and pretend that everything’s okay. Stop stealing my denial, dammit.
Secondly, it’s seriously cutting into my personal life. Right now, my ankle is too stiff to do anything except slow walking, and it’s really hard not to walk with a limp. The worst part, however, is the body blahs that come with the joint aches. It’s like I’m perpetually about to come down with the flu, but it never gets here. I get tired really easily and, just like a kindergartner, I require an afternoon nap to remain functional. I can ignore just the joint pain, and I can push through the IBS and sinus problems. But I can’t just magically make myself perky, it’s hard to pretend to walk normal on a swollen ankle, and my mother is taking notice.
So, for the moment, all I can say about Mobic is that it makes life pretty swell. I just wish it was all swelling a lot less.
Since then, I’ve been trying to use NSAIDs to take care of the pain and swelling I’m experiencing, and with very limited success. I had already been on ibuprofen for a couple of weeks before that, but for some reason it’s stopped working. The fabulous Dr. H has therefore put me on Mobic to see how well it keeps down the inflammation. I’m out of town for three weeks visiting family, however, so changing prescriptions and whatnot will be a pain if this doesn’t really work.
On the whole, it’s slightly better than the ibuprofen. The swelling had been a lot better for the last few days, but today my forearms are all achy and my ankles are puffed out like a marshmallow again. It’s still not as bad as before I started the Mobic… but it’s not great, either. I have to give this a couple more weeks to see how I do before I can pronounce judgment.
But this whole swollen joints thing bothers me a lot, and I there’s a couple of reasons why it does so. First of all, it’s the first hallmark, visible symptom of lupus I’ve had. Sure, I’ve had the joint pain and numbness before, and I’ve had pericarditis, but it’s not like other people could actually see that. My puffy ankles are pretty obvious if I wear sandals (so I haven’t been,) and with everything else going on the ankles might be enough to clue them in. Secondly, this just feels like it’s putting the final few nails in the lupus coffin and now I can’t escape. After all, everybody likes to think that maybe, just maybe they’ll escape such a lousy diagnosis, right? I’m really no different, and my puffy joints are a symptom that I can’t ignore and pretend that everything’s okay. Stop stealing my denial, dammit.
Secondly, it’s seriously cutting into my personal life. Right now, my ankle is too stiff to do anything except slow walking, and it’s really hard not to walk with a limp. The worst part, however, is the body blahs that come with the joint aches. It’s like I’m perpetually about to come down with the flu, but it never gets here. I get tired really easily and, just like a kindergartner, I require an afternoon nap to remain functional. I can ignore just the joint pain, and I can push through the IBS and sinus problems. But I can’t just magically make myself perky, it’s hard to pretend to walk normal on a swollen ankle, and my mother is taking notice.
So, for the moment, all I can say about Mobic is that it makes life pretty swell. I just wish it was all swelling a lot less.
Thursday, June 24, 2010
Lupus Guide for the Perplexed: Raynaud's Phenomenon
other names: Raynaud's disease; Zombie Fingers; Death Gives a Hand Job
If you've ever looked down at your hand and started cussing uncontrollably in a panicky, high-pitched voice, then you've probably had a bout of "zombie fingers," or as it's more commonly (and less amusingly) known, Raynaud's Phenomenon. The official name for this symptom makes it sound like some really cool sport of nature, like Northern Lights, ball lightning, or Adam Lambert. It doesn't even begin to capture the weirdness of realizing that your fingers have decided to show you what you're going to look like when you're dead.
In reality, Raynaud's Phenomenon only looks bizarre for the most part; you don't have leprosy, you're not turning into a flesh-eating zombie, and your fingers are really not going to drop off your hands like a bad episode of the Dick Van Dyke Show. Just give them a couple minutes, or up to an hour, for the circulation to come back. Only in very severe cases where it happens constantly (or doesn't go away) does Raynaud's phenomenon cause circulation or tissue health problems, so don't panic.
Raynaud's Phenomenon occurs when the blood vessels in your fingers (or even your toes, ears and nose) constrict suddenly, limiting blood flow; the affected area will look dead and pasty at first, and then a lot of times become blue at the tips. In most cases, it doesn't last very long, and for most people it isn't painful-- although some people get some pain and tingling because, you know, there's no blood down there.
As to its causes, it seems like a lot of things can tell those blood vessels to clamp up-- things like cold, pressure on your fingers, or getting really stressed out. The underlying causes can range from low thyroid to certain medications, sensitivity to drugs that affect circulation, to arthritis and injury. In fact, it's apparently a workplace hazard of professional pianists. Autoimmune diseases, obviously, are a possible cause too, because of the havoc they can wreak on connective tissues.
If you ever have Raynaud's phenomenon, it's obviously good to chat with your doctor about it. For most people it's not a sign of the zombie Apocalypse. Instead, the next time it happens, enjoy it! Get yourself the Thriller soundtrack, a zombie suit, and go scare some little kids.
Sunday, June 20, 2010
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.
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.
Tuesday, June 8, 2010
Lupus Testing on a Budget
It's been very expensive on my end to maintain my "I think you might have an autoimmune disease but we're not sure" lifestyle. I bet I have spent, over the last nine years, close to ten grand for various tests, ER visits, antibiotics, and whatnot, and I had super-duper government insurance for four years of that. And none of that spending was my idea. It's rather frustrating to imagine what my new car would have looked like had I been a normal, healthy person.
It wasn't too bad when I had the federal government paying for all my medical insurance as the dependent of a military officer. It really sucked when I was paying $400 a month out of pocket every month for my insurance when my hubby was working as an engineer. As a student...? Meh. It's a compromise. Some things work well, and some things don't.
On the one hand, my student insurance drags its feet, kicking and screaming, every time I have a big budget expense like my gall bladder surgery. I have to prove I'm still a student by sending in a form to the registrar which somehow never quite makes it by the deadline and my claim gets rejected. Then I get to scream at them (which is quite exhilirating.) But I've never had to eat a single claim. It's all worked out.
On the flip side, I've discovered a few benefits to being tested for an autoimmune disease on student insurance that might not be available to the common insured. I shopped around until I found my wonderful student clinic doctor, Dr. H., and I've stuck with her for practically everything over the last four school years. She's gotten to know me (and my prodigious medical chart) and has a good feel for what things I actually need to stay healthy and which tests and procedures are just extras. And, since she works with students a lot, she's very sensitive to the cost issue. She doesn't short-change my health care at all, but she has some nice ninja-esque tricks to keep the costs down on my end.
For instance: at my university, we have a fully-functioning health clinic with a lab, which means that they can do a surprising number of blood, urine, fecal, and skin tests in-house. The way my insurance works is that anything that doesn't need to be sent out to be processed I get done for free. They give the doctors a lot of warnings about running needless tests to keep costs down, but I can still get a lot of my bloodwork done without paying anything out of pocket.
So, here's the arrangement me and my doctor have been using. We built up a nice little schedule of regular testing (about every eighteen months) for the autoimmune stuff, and she stuck mainly to the cheaper tests that can raise red flags and indicate a need to test for other stuff. For instance, I get tested for syphilis to see if I get a false positive result. (I think our campus gets a wholesale rate on STD testing kits or something. Go figure.)
Whenever other red flags raised up (like my funny liver test,) she ran more specific testing in-house.
Whenever she's sent me to some kind of specialist (like the rheumatologist coming up) she anticipates the blood tests she's pretty sure that the specialist is going to order anyhow, and she runs them up front and sends them along with my chart. That way the specialist gets their tests ahead of time and I don't have to pay for them. Nifty, huh? The especially nice thing is that, so far, her forward-thinking has saved me a followup visit or two as well. That's pretty sweet when you consider my copay for a single visit is a hundred and fifty bucks.
So far, I've only had one test that the student health service couldn't run themselves-- celiac disease. But it was still cheaper because the university lab could draw the blood, and I didn't have to pay a copay to have someone else do it.
For other tests, like ultrasounds and whatnot, I never leave the doctor's office without a referral, whether I need one or not. That cuts out any possibility of the insurance denying a claim based on not having a referral ready.
And so, that's one way I've started to figure out how to do lupus testing on a student budget.
It wasn't too bad when I had the federal government paying for all my medical insurance as the dependent of a military officer. It really sucked when I was paying $400 a month out of pocket every month for my insurance when my hubby was working as an engineer. As a student...? Meh. It's a compromise. Some things work well, and some things don't.
On the one hand, my student insurance drags its feet, kicking and screaming, every time I have a big budget expense like my gall bladder surgery. I have to prove I'm still a student by sending in a form to the registrar which somehow never quite makes it by the deadline and my claim gets rejected. Then I get to scream at them (which is quite exhilirating.) But I've never had to eat a single claim. It's all worked out.
On the flip side, I've discovered a few benefits to being tested for an autoimmune disease on student insurance that might not be available to the common insured. I shopped around until I found my wonderful student clinic doctor, Dr. H., and I've stuck with her for practically everything over the last four school years. She's gotten to know me (and my prodigious medical chart) and has a good feel for what things I actually need to stay healthy and which tests and procedures are just extras. And, since she works with students a lot, she's very sensitive to the cost issue. She doesn't short-change my health care at all, but she has some nice ninja-esque tricks to keep the costs down on my end.
For instance: at my university, we have a fully-functioning health clinic with a lab, which means that they can do a surprising number of blood, urine, fecal, and skin tests in-house. The way my insurance works is that anything that doesn't need to be sent out to be processed I get done for free. They give the doctors a lot of warnings about running needless tests to keep costs down, but I can still get a lot of my bloodwork done without paying anything out of pocket.
So, here's the arrangement me and my doctor have been using. We built up a nice little schedule of regular testing (about every eighteen months) for the autoimmune stuff, and she stuck mainly to the cheaper tests that can raise red flags and indicate a need to test for other stuff. For instance, I get tested for syphilis to see if I get a false positive result. (I think our campus gets a wholesale rate on STD testing kits or something. Go figure.)
Whenever other red flags raised up (like my funny liver test,) she ran more specific testing in-house.
Whenever she's sent me to some kind of specialist (like the rheumatologist coming up) she anticipates the blood tests she's pretty sure that the specialist is going to order anyhow, and she runs them up front and sends them along with my chart. That way the specialist gets their tests ahead of time and I don't have to pay for them. Nifty, huh? The especially nice thing is that, so far, her forward-thinking has saved me a followup visit or two as well. That's pretty sweet when you consider my copay for a single visit is a hundred and fifty bucks.
So far, I've only had one test that the student health service couldn't run themselves-- celiac disease. But it was still cheaper because the university lab could draw the blood, and I didn't have to pay a copay to have someone else do it.
For other tests, like ultrasounds and whatnot, I never leave the doctor's office without a referral, whether I need one or not. That cuts out any possibility of the insurance denying a claim based on not having a referral ready.
And so, that's one way I've started to figure out how to do lupus testing on a student budget.
Friday, June 4, 2010
Lupus Guide for the Perplexed: ANA testing
I have a strange reaction to bad news. I want to laugh at it, in the most savage, sarcastic and brutal way possible. I know it's an odd response to tragedy, but for some reason it helps me keep things in perspective and keeps me from going insane. So, with all this auto-immune disease stupidity I'm going through, I think I'll make fun of that, too.
In the interest of giving people some basic information on what the SLE testing process is like, and in the interest of me not going insane, I've decided to kill two birds with one stone and do a series on lupus vocabulary. The information is all culled from legit government and academic sources, although a little... strange. This is the first installment, and I hope you enjoy it!
ANA (Anti-nuclear antibody):
In layman's terms, this is a blood test to determine your body's level of misdirected hatred and self-loathing, and could just as well be termed your Immunological Emo Factor; it's just a way to see if your white blood cells have a Flock of Seagulls haircut or listen to Snow Patrol on their itty-bitty little iPods.
To be serious, an ANA is a serum-based screening method that's designed to check for signs of your immune system attacking normal cells instead of, you know, diseases and stuff. A lab technician puts some of your serum in a petri dish with some cells to see what happens. If everybody holds hands and sings protest songs, then it's negative. If World War III in a microcosm breaks out, then it's positive. The presence of antibodies that go after the nucleic matter in cells is an indication that something is rotten in the state of your autoimmune Denmark, telling your doctor that it's time to look further and see why everybody's so angsty all of a sudden.
This test can have a variety of different 'positive' readings that can be helpful to point your doctor to possible diagnoses, but it's not by any means going to tell you if you have SLE; a positive result on an ANA can indicate everything from other autoimmune diseases to cancer to absolutely nothing. This is simply the version of your immunological "check engine" light going off. If it's blinking, then maybe you've blown a head gasket. It's much more likely that your gas cap is loose.
How important is a positive ANA to being diagnosed with lupus? Sort of. Depending on whom you ask, 95-97% of lupus sufferers will eventually have a positive ANA. (And there's literature trying to figure out what's up with that other 5%.) The ANA doesn't mean you have lupus, but it is the first line of attack doctors will use to determine whether or not to start worrying about it.
So, if a doctor, like a good car mechanic, suspects lupus, this is often the first place they'll check because there is no reason to run more specific antibody tests until this one shows that there's a problem. But, just because you get a negative result on your first ANA doesn't mean you won't pop positive later-- so it's important to have your ANA run several times, over several years, and make sure that all come back negative before you stick a stake in the heart of your autoimmune vampire. He might still be lurking, with his Emo haircut and black lipstick, to show up and whine about how you don't appreciate him when you least expect it.
In the interest of giving people some basic information on what the SLE testing process is like, and in the interest of me not going insane, I've decided to kill two birds with one stone and do a series on lupus vocabulary. The information is all culled from legit government and academic sources, although a little... strange. This is the first installment, and I hope you enjoy it!
ANA (Anti-nuclear antibody):
In layman's terms, this is a blood test to determine your body's level of misdirected hatred and self-loathing, and could just as well be termed your Immunological Emo Factor; it's just a way to see if your white blood cells have a Flock of Seagulls haircut or listen to Snow Patrol on their itty-bitty little iPods.
To be serious, an ANA is a serum-based screening method that's designed to check for signs of your immune system attacking normal cells instead of, you know, diseases and stuff. A lab technician puts some of your serum in a petri dish with some cells to see what happens. If everybody holds hands and sings protest songs, then it's negative. If World War III in a microcosm breaks out, then it's positive. The presence of antibodies that go after the nucleic matter in cells is an indication that something is rotten in the state of your autoimmune Denmark, telling your doctor that it's time to look further and see why everybody's so angsty all of a sudden.
This test can have a variety of different 'positive' readings that can be helpful to point your doctor to possible diagnoses, but it's not by any means going to tell you if you have SLE; a positive result on an ANA can indicate everything from other autoimmune diseases to cancer to absolutely nothing. This is simply the version of your immunological "check engine" light going off. If it's blinking, then maybe you've blown a head gasket. It's much more likely that your gas cap is loose.
How important is a positive ANA to being diagnosed with lupus? Sort of. Depending on whom you ask, 95-97% of lupus sufferers will eventually have a positive ANA. (And there's literature trying to figure out what's up with that other 5%.) The ANA doesn't mean you have lupus, but it is the first line of attack doctors will use to determine whether or not to start worrying about it.
So, if a doctor, like a good car mechanic, suspects lupus, this is often the first place they'll check because there is no reason to run more specific antibody tests until this one shows that there's a problem. But, just because you get a negative result on your first ANA doesn't mean you won't pop positive later-- so it's important to have your ANA run several times, over several years, and make sure that all come back negative before you stick a stake in the heart of your autoimmune vampire. He might still be lurking, with his Emo haircut and black lipstick, to show up and whine about how you don't appreciate him when you least expect it.
Wednesday, June 2, 2010
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:
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
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
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.
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?
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...
"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?"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.
"For crying out loud, I sprained my freakin' ankle! My foot is swollen, not 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
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
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.woman × ("fibromyalgia" + symptoms I can't test for) = hysterical
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."So, here was another story that didn't seem to fit:
"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.
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.numb hands + student = carpal tunnel syndrome
because
numb hands ≠ fibromyalgia
"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..."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.
"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.
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?
- Sometimes doctors feel hard pressed to give a diagnosis even when they're totally stumped. Especially when they're stumped.
- 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.
- Just because s/he's a rheumatologist doesn't mean they're not stupid or not susceptible to problems 1 and 2.
- 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.
- The more bitchy and combative you get during an office visit, the more likely it is you'll get labeled a hypochondriac.
- 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.
- 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.
- 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.
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...
Tuesday, June 1, 2010
Medicinal Dodgeball
Guess what? I don't have lupus! (Ahem.)
Allow me to rephrase that.
I don't have lupus yet!
So, I met with the fabulous Dr. H again this morning after waiting, twitchily, in the waiting area for a good forty-five minutes because they were down one doctor. Then, once they cleared the backlog, she sat down to give me a good chat about my blood work.
As it turns out, the lupus antibody panel wasn't clear, but it wasn't indicative of lupus. I had a negative test result for my anti-DNA, anti-SM, and all those other proteins that start to sound like antimatter and physics to me, and the other things we checked on (the rheumatoid arthritis and a syphilis test) came back negative, too.
But, as with everything regarding autoimmune testing, there's always one catch: I have an abnormal anti-centromere antibody level. As far as I can tell, that's the presence of antibodies that attack the centromere, the sticky little protien glob that holds the chromosomes together.
According to my super-accurate and reliable Google search (wink), a positive anti-centromere result usually shows up with people with the two types of scleroderma (which seems pretty freaking unlikely) and Raynaud's disease. And, as it turns out, I have had dead, white-looking fingers once, so that seems to be the culprit. But, as we all know, Raynaud's phenomenon also occurs in people with lupus, so I am far from off the hook. All my tests have confirmed, it seems, is that I am in fact suffering from some symptoms common to lupus, and that's it.
Due to the vagaries of student insurance (my university is re-bidding our insurance) I can't get in to see a rheumatologist until August if I don't want to pay for it out of pocket because there's always a chance a new provider won't cover my doctor. So, here's to more waiting!
Allow me to rephrase that.
I don't have lupus yet!
So, I met with the fabulous Dr. H again this morning after waiting, twitchily, in the waiting area for a good forty-five minutes because they were down one doctor. Then, once they cleared the backlog, she sat down to give me a good chat about my blood work.
As it turns out, the lupus antibody panel wasn't clear, but it wasn't indicative of lupus. I had a negative test result for my anti-DNA, anti-SM, and all those other proteins that start to sound like antimatter and physics to me, and the other things we checked on (the rheumatoid arthritis and a syphilis test) came back negative, too.
But, as with everything regarding autoimmune testing, there's always one catch: I have an abnormal anti-centromere antibody level. As far as I can tell, that's the presence of antibodies that attack the centromere, the sticky little protien glob that holds the chromosomes together.
According to my super-accurate and reliable Google search (wink), a positive anti-centromere result usually shows up with people with the two types of scleroderma (which seems pretty freaking unlikely) and Raynaud's disease. And, as it turns out, I have had dead, white-looking fingers once, so that seems to be the culprit. But, as we all know, Raynaud's phenomenon also occurs in people with lupus, so I am far from off the hook. All my tests have confirmed, it seems, is that I am in fact suffering from some symptoms common to lupus, and that's it.
Due to the vagaries of student insurance (my university is re-bidding our insurance) I can't get in to see a rheumatologist until August if I don't want to pay for it out of pocket because there's always a chance a new provider won't cover my doctor. So, here's to more waiting!
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