House says it's not Lupus, but I disagree.
September 14, 2010 3:25 PM   Subscribe

I have many of the symptoms of Lupus, and my mother has the genetic defects that cause a number of autoimmune diseases including Celiac and Lupus. How do I go to my doctor and insist I get tested without her laughing me out of the office or convincing me otherwise that I don't have lupus? Also, I might be crazy. Obviously, YANA/MD

So, for the last year, I've been feeling really crappy in general. Starting in September of 2009, I've been getting recurring infections (yeast and urinary tract), and the doctors have found (so far) no reason for the repeated infections. Within the last 6 months or so, I've been feeling especially weak and tired, extremely light-headed (every time I stand up, my vision blurs to white and I have to brace myself), I've had some joint pain (knees, hips, neck, hands and feet), my hands have been going numb on and off, I've been getting pretty severe headaches/migraines (with a sensitivity to light), fairly severe indigestion (my bowel movements have been all over the spectrum of weirdness and are totally unpredictable with no significant change in diet), lower abdominal pain, soreness/pain on my right bottom rib (where my liver is), and I've had two sores on my lips (I do not have herpes; at least, the strain that they test in the normal STD blood test).

I've had terrible nosebleeds and arrhythmia (and chest pain similar to those with pleurisy) all my life. I've worn a heart monitor for 24 hours when I was a teenager, but they never found anything. My younger sister complained of the same issues, and eventually wore a monitor for a full month, which is when the problem was found. I don't remember what her diagnosis was. Something with "White" in the name.

Recently, my mother was tested for Celiac disease, and it turns out she has the genetic markers for it. Those genetic markers are the same for Lupus, and she once casually mentioned to me that it sounds like the symptoms are similar to a lot of things I've been experiencing.

Possibly also related: within the last 6 months, I've been on many, many, antibiotics, including Diflucan, Cipro, Bactrim, and Flagyl, all of which I've taken at least twice. Could these have caused some kind of antibiotic induced disorder?

So, I know I need to go see my doctor. I have insurance and a PCP. However, I was recently (a month ago) prescribed Lexapro for GAD, and I'm afraid my doctor will think I'm being anxious about this. I HONESTLY feel better about a lot of things in my life. I'm in therapy, which has been amazing. Still, I feel like there is something wrong with me. I really do feel ill. How do I lay this all out for my doctor and ask her to test me without sounding like a hypochondriac? Will she automatically assume that my anxiety hasn't gone away, or chalk it up to my medication? Is it enough that I insist that she test me? Raah, help! I want to feel better. Throw away email:
posted by anonymous to Health & Fitness (20 answers total) 2 users marked this as a favorite
There's actual medical documentation of all these problems right? Gather it all up and just give it to her straight. And be confident and self-assured when you do. This is her job.
posted by amethysts at 3:34 PM on September 14, 2010 [1 favorite]

When my family suspected I had lupus (I had a family history and symptoms) I just asked my doctor to test me. There was no hesitation on his part and it ended up indicating lupus. It's important to know that there's no test that can definitively tell you whether you have lupus, more like a checklist. If she blows you off go to another doctor. I spent years seeing doctors for different symptoms and none brought up lupus until I did.

Bonus Info: I had what appeared to be chronic bladder infections and it ended up being interstitial cystitis, which is pretty common in women with autoimmune disorders. I would bring that up with your doctor, too.
posted by MaritaCov at 3:36 PM on September 14, 2010

Just my two cents...Why don't you just ask your doctor if she can test you for lupus? Unless you really are a hypochondriac and have requested a bunch of tests for varying diseases over the years I don't see why she wouldn't pay attention to your concerns.
And, while IANYD, why not lay off the wheat for a month or so and see if your symptoms improve (many of the symptoms you mention sound like a wheat allergy). You may want to take some acidophilous as well to replensh the bacteria that the antibiotics have wiped out. Finally, if you have been always looking for illness in yourself your entire life, why not concentrate on other stuff (volunteer and help other people, focus on school, etc) because what you focus on you usually get and if you are always focusing on illness, that be exactly what you get. Yikes.
posted by MsKim at 3:37 PM on September 14, 2010 [1 favorite]

The first thing I would do is make a list of your symptoms. Note their severity and frequency. If you have some time before your next doctor's appointment, you might want to keep a diary. If you're a woman, pay attention to whether they get worse when you have your period. I would also talk to your mom and get a better family medical history. What exactly did she test positive for? What was your sister's diagnosis? Does anyone in your family have an autoimmune disease, and if so which one?

I initially had an antinuclear antibody test because I had persistent hives. They just wanted to rule out autoimmune things, and then when it came back positive they sent me off to a rheumatologist who ran more tests. I don't think that an ANA test is a huge deal, and my hunch is that it won't be terribly hard to convince your doctor to get one for you. You should realize, though, that the ANA test isn't going to tell you very much. If it's negative, you could still have lupus. If it's positive, you very well might have something other than lupus, or you could have nothing at all. My positive ANA turned out to be a bit of a nightmare. The Rheum informed me that she'd never seen someone with an ANA as high as mine who didn't have an autoimmune disease, but there was no sign of any disease at the moment, so I should go home and wait for the other shoe to drop. Fun! When it finally did, it was actually a bit of a relief. It's not easy to diagnose autoimmune diseases, and you should realize that getting a correct diagnosis is probably going to be a pretty long and involved process if you do have lupus or a related problem.
posted by craichead at 3:43 PM on September 14, 2010 [1 favorite]

Is it possible to see the doctor your mother sees, since s/he knows the family history of autoimmune problems? If you're in a big city, it might also be helpful to look for doctors or clinics that specialize in "unconventional" diseases or treatments - I found one in NYC that integrates Eastern and Western medicine, and it's covered by my insurance.
posted by earth oddity at 3:46 PM on September 14, 2010

If you think you have celiac, don't stop eating wheat until you get a blood test.
posted by sugarfish at 3:47 PM on September 14, 2010

Can you elaborate on the "same genetic markers for lupus and celiac"? I've not heard that before and have a kid with celiac. Eating wheat with celiac can certainly cause all sorts of unpleasant and serious symptoms.

If you've been on a ton of antibiotics eating a lot of live culture yogurt and taking some probiotics could help with some of the tummy and other symptoms - it's possible to get very out of whack from that. Getting my son blood tests for celiac wasn't at all difficult - we too have a family history and I just asked and had it done. If your doctor won't cooperate it's certainly worth looking elsewhere.
posted by leslies at 3:55 PM on September 14, 2010

Ask your doctor to do an ANA test. It's a blood test. Your insurance should cover it. I had one done after having chronic hives and a blood test came back with a low white blood cell count. I can't remember, but I think the ANA can be broken down into more specific things, SA/SB or something, which I think costs more (this was covered by my insurance as well), but narrows things down if the ANA test is positive.
posted by backwords at 3:55 PM on September 14, 2010

IANAD, IANYD. Regarding your sister's diagnosis: a quick google of "heart disease white" came up with Wolff-Parkinson-White syndrome, which is an issue with a bundle of Kent. It is treated by medication, cardioversions or catheter ablation (permanent solution to it).

If you don't trust your doctor, or you feel your doctor has given up, there is no hurt in a second opinion. Consider a doctor that deals in difficult diagnoses (House) or one that specializes in autoimmune disorders. Lupus is known most for the fact that it is difficult to diagnose properly. A lot of other disorders look like Lupus and Lupus looks like a lot of other disorders. Be open to the possibility that it might not be Lupus.
posted by Mister Fabulous at 4:03 PM on September 14, 2010 [1 favorite]

--You might be being anxious about this. That is okay. Feeling unwell can be scary. Putting yourself out there and letting someone know you're worried, when it might be about nothing, can also be scary. That's okay. It's okay to be worried sometimes.

--With your symptoms she can do some basic tests (and should), probably for things like iron, ANA, etc. My autoimmune illness was caught quite handily with basic joint pain and fatigue, which got me an ANA, which got me a referral to a rheumatologist.

--Lots of infections might be the result of an autoimmune thing, too. Or lots of infections could just have you feeling like hell because they're hard on your body.

--Maybe you are a hypochondriac; if so, that's something to work on with your therapist, generally after you've been given a clean bill of health. I've been there, and I've had a couple of doctors who were assholes about it and one who is really chill and willing to check me out and then say "this might be an anxiety thing" but recognize that it's not JUST an anxiety thing--

--Anxiety is significant, it feels like hell, and it's partly physical (sweaty, chest pain, difficulty breathing to name a few symptoms). My doctor realizes that and considers anxiety to be a real problem that he takes seriously, because it's part of his care for my entire physical well-being. I hope you find a doctor who does the same.
posted by the young rope-rider at 4:12 PM on September 14, 2010 [2 favorites]

Oh and also, as someone with a significant autoimmune disorder who has been through the diagnosis game, unless your PCP is completely incompetent s/he should be able to effectively screen you for an autoimmune problem and then refer you to a specialist. Autoimmune stuff is familiar to pretty much every PCP I've ever run into. Many of them are perfectly willing and able to treat low-key autoimmune stuff by themselves.

It's difficult to diagnose lupus, yes, but it's relatively easy to figure out "hey, this person has some kind of autoimmune thing, let's treat it". Then, as evidence builds up over the years, they'll say "okay, now we can say lupus (SLE)". You don't want to be diagnosed with lupus, frankly, because it means that your symptoms are quite severe/notable. Better to be under a catch-all like "mixed connective tissue disorder", get some anti-malarials, feel better, and move on with your life.
posted by the young rope-rider at 4:16 PM on September 14, 2010 [1 favorite]

Possibly also related: within the last 6 months, I've been on many, many, antibiotics, including Diflucan, Cipro, Bactrim, and Flagyl, all of which I've taken at least twice. Could these have caused some kind of antibiotic induced disorder?

IANA (or Y) Doctor.

A two-week course of clindamycin gave me really bad systemic yeast problems, which I suspect might have been C. Diff (long story as to why it wasn't diagnosed). A friend had a similar experience. For what it's worth, I had not only gastro problems but the worst case of oral thrush ever, which gave me mouth sores. And lots of yeast infections. It was awesome. Look into C. Diff.

Also, a really common side effect of Lexapro is feeling exhausted, according to my husband. Who is also NYD.
posted by PhoBWanKenobi at 4:32 PM on September 14, 2010

Yes, antibiotics will give you yeast infections because bacteria are what keep you from being "eaten alive" by yeast. The antibiotics kill off much of your good bacteria as well as the bad.

Keep in mind that your gut flora is also killed off by antibiotics, and you need gut flora for healthy digestion.

Some of what you are feeling may simply be due to the antibiotics, so try to relax as you prepare for your next doctor's visit. (IANAD/IANYD)
posted by Knowyournuts at 4:38 PM on September 14, 2010

gut flora = good bacteria
Sorry for the jargon.
posted by Knowyournuts at 4:39 PM on September 14, 2010

I don't think you can assume anything about what your doctor will think. Just lay out all your symptoms and get a blood test. The ANA is simple and very specific, although not very sensitive. And whether it comes up positive or negative, it might ease your anxiety some: positive because you have a diagnosis to run with, or negative because it means you're probably clear.

I agree with some of the earlier comments about taking probiotics. Yogurt is good for that, but if you can't digest dairy, you can get them in caplets. Beneficial bacteria are always fun.

PhoBWan, C. difficile is a bacterium, not a yeast.
posted by skyl1n3 at 4:47 PM on September 14, 2010

Sorry for the conflation, skyl1n3. But my experience of concurrent gut bacteria problems/yeast problems weren't entirely unusual. The point remains that those antibiotics can really screw up the balance of your gut as well as other systems.
posted by PhoBWanKenobi at 5:06 PM on September 14, 2010

Just for the record, Diflucan is an anti-fungal (an awesome one, however!).

I don't think you doc will think you're crazy or anxious. SSRI's like Lexapro are so common these days that doctors don't even blink when they see it on a patient's chart. IANAD but I'd much rather have a patient who acknowledges and is trying to work on their anxiety, rather that one who has uncontrolled anxiety.

My #1 suggestion for people when they go to doctors is to come prepared with information. Write up your symptoms (history, frequency, severity), any meds you take, and a brief medical history. I usually just hand it to the doc or tech and tell them to put it in my chart. They're usually pleasantly surprised at this. Doing this a) increases the quality of communication between you and your healthcare providers and b) decreases your anxiety about talking about your issues.
posted by radioamy at 7:56 PM on September 14, 2010

Finally talking to a doctor about your health problems can be rather freeing sometimes. I tend to be a bit overly stoic about my own health, and therefore I have to spend a lot of time talking myself into actually seeing a doctor about a problem. By the time I get to the doctor's office, I've generally convinced myself that I'm being completely ridiculous and that I will get laughed out of the examining room for coming to them with such a stupid complaint.

But what you can forget in that swirl of self-doubt is that it is a huge relief to have a doctor confirm that you are right and that something is wrong. Not because it's good to be sick, but because after questioning your own judgement for a long time, it is a relief to have your original instincts confirmed. It can be a relief to have an official voice tell the ugly one in the back of your head that, actually, you have been feeling really crappy for a while and you're not making it up because you're crazy or stupid or whatever. Similarly, it can be a bit of a jolt to your perspective to bring up something to a doctor that you've been downplaying in your head for a long time and have them immediately sit up and take notice.
posted by colfax at 9:41 PM on September 14, 2010

The heart problem they found in you sister is most likely Wolff-Parkinson-White syndrome.
Not your question, I know, but probably good to know.
posted by brevator at 5:40 AM on September 15, 2010

I don't think you can assume anything about what your doctor will think. Just lay out all your symptoms and get a blood test. The ANA is simple and very specific, although not very sensitive. And whether it comes up positive or negative, it might ease your anxiety some: positive because you have a diagnosis to run with, or negative because it means you're probably clear.

FYI -- these statements are largely inaccurate. The ANA is NOT very specific, though it is rather sensitive. Up to a third of healthy normal subjects have elevated titers. Which mean that if the test is positive, which there is a good chance it may be even if you don't have lupus, it certainly won't give you a diagnosis you can "run with." If the test is negative, the only thing you know is that it's probably not lupus, but that's hardly an answer. If the test is positive, you won't necessarily have a diagnosis for your complaints, but it sure won't help your anxiety levels. The false positive rate of this test is as high as 90%, which is why it shouldn't be thrown around indiscriminantly (i.e. without an appropriate pre-test probability).

Lupus is a clinical syndrome diagnosed best by an experienced physician (preferably a rheumatologist) who has seen its clinical manifestations. Blood tests only play a partial role in the diagnosis, so insisting that you just get tested really isn't a helpful approach because lupus isn't something you just get tested for. As others have said, talk to your doctor about your symptoms and ask if they think it might be lupus. See what they say and go from there.
posted by drpynchon at 2:16 PM on September 15, 2010 [2 favorites]

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