Sick since Nov. How do I get the doctor to pay attention?
March 21, 2007 6:41 PM   Subscribe

I've been sick since November. My doctor seems less than concerned. Now what?

I've always been one of those people who gets everything, and in the past few years it's been worse. This November I developed an abscessed lymph node in my neck. Since then, I've been even worse than usual. I've had frequent fevers and chills, body aches and strange nerve pain. My already random periods are almost nonexistent. I ended up in the ER one night with chest pains that seemingly had no cause. Every time I went to the doctors with these symptoms, my doc or the doc on call dismissed them as being "an unknown virus" or sciatica or in the case of the chest pains, a panic attack. I have anxiety disorder, and my panic attacks definitely do not involve chest pains like that.

2 weeks ago I went to the ER with vomiting and a 103+ temp and was admitted for 3 days. They did every test known to man and found nothing wrong except a low platelet count. This is normal for me. After I told him this and recounted some of my other symptoms, like the muscle pains and petechiae, the doc at the hospital suggested that I might have idiopathic thrombocytopenic purpura, which might indicate some kind of auto-immune issue and that I should see a rheumatologist.

When I followed up with my primary care doc, she didn't seem sold on this and ordered more tests, all of which were normal, except the platelets. She referred me to a hematologist, who I can't get in to see until the end of April. My doc actually suggested to me that "if your family is anything like mine" I'm probably too busy to eat and sleep well and that's why I'm sick.

A week after leaving the hospital I started throwing up randomly. Since this past Sunday I've thrown up every day except today. I have intense aches in my hips and pelvis and shooting pains in my left thigh. If I try to do anything more strenuous than sit in bed I get exhausted and sore and I feel nauseous and feverish.

I have an appointment on Friday with my primary doc. How do I lay all these issues out and advocate for myself? At the very least I think I should be referred to hematologist who can see me sooner. I am just so frustrated and discouraged right now. Any ideas?
posted by Biblio to Health & Fitness (44 answers total)
Response by poster: Oh, forgot to mention, I'm a 34 year old woman, 2 kids, no known illnesses or conditions besides the triumvirate of depression/anxiety/ADD. (wouldn't you be depressed too?)
posted by Biblio at 6:44 PM on March 21, 2007

What are you eating? What runs in your family? Have you taken any drugs/antibiotics in the last year? Any other infections (ear, yeast, skin, acne, etc.)? Any known allergies? Any trauma, past or present? You have given us a history of your care and symptoms, which is great, but it might be helpful to have even a fuller picture about your lifestyle, how much stress, how you manifest your stress, etc. Any and everything is relevant. And could help narrow down exactly what info you can prepare and present to your doc.
posted by iamkimiam at 6:47 PM on March 21, 2007

That's bullshit. Go to a different doctor immediately or go back to the ER and ask for a direct referral.
posted by fshgrl at 7:03 PM on March 21, 2007 [1 favorite]

Get a doctor that actually listens to you and hears your concerns.
posted by fluffy battle kitten at 7:06 PM on March 21, 2007

Agree... you NEED a second (third?) opinion. Go elsewhere -- your health depends on this.
posted by chef_boyardee at 7:28 PM on March 21, 2007

Have you sought treatment for the "triumvirate" and successfully resolved that stuff before worrying about the rest?
posted by fire&wings at 7:28 PM on March 21, 2007

If you lay everything on the table for your doc this Friday- and impress upon her that this is urgent and that waiting until April is unacceptable- you may get the help that you need more quickly (it's amazing to watch how helpful pysicians become when they smell "malpractice lawsuit" in the air). But regardless of the outcome, please do some scouting around and find a really good internist who is willing to do the careful footwork and thoughtwork that comes from taking your problems seriously and thinking about them systematically. Request referrals from friends in your area (and possibly MeFi).

I'm assuming you haven't been able to head to the specialist directly b/c your insurance company needs clearance from your primary care physician- and the one you currently have is actively impeding you from seeking the care it will take to identify and address what may be a very dangerous condition.

Your doctor was a crappy doctor before all of this hit, but the way she is treating you at a time when you need her to be a good doctor- when you have been sick for months with something that's complicated and won't go away- has made it painfully clear that she needs to be replaced.
posted by foxy_hedgehog at 7:36 PM on March 21, 2007

If I were you, I'd probably have looked for a new primary care doctor by now. Is there a particular reason you have not done this? Are you under some particularly restrictive HMO or PPO? Even if you are, there should be some avenue of appeal if you are not getting acceptable service from your current provider.

Since you are seeing this doctor this week, I suggest that you write out all your concerns and questions in advance, just as you did in your original post. Give a copy to your doctor and have a copy for you, and go over each point one by one in your visit, making sure you don't skip anything. Include the dates of the various symptoms and episodes and doctor visits, ER visits, hospital admissions, etc. Emphasize also that you are clearly suffering from a poor quality of life and that you require a higher level of attention and response.
posted by Robert Angelo at 7:52 PM on March 21, 2007

How long have you been with this doctor? You mentioned that you "get everything". It sounds like your doctor has pegged you as a hypochondriac and doesn't take your symptoms seriously. Find a new one.
posted by qvtqht at 8:12 PM on March 21, 2007

It does sound like auto-immune issues to me. Certainly deserves more than a brush-off from your doc.

'Sciatica' by the way is not a diagnosis but a description of one small subset of your symptoms. Causes might include a herniated disc or an inflamed muscle in the pelvis pressing on the sciatic nerve.

posted by unSane at 8:15 PM on March 21, 2007

Response by poster: In answer to a few questions:
I eat a relatively healthy diet, mostly all-natural, organic stuff, hormone and antibiotic free meat, occasional lapses into junky comfort food, but overall a more healthy diet than most Americans, I would guess. I have no known allergies. I have also put on quite a bit of weight in the past few years, and it's been very difficult to maintain an exercise regime when I'm so often sick.

Diabetes is on both sides of the family. I have a cousin with MS and a sister who had Henoch-Schoenleine Purpura as a child and teen.

I am on Celexa, Adderall and Trazodone and have been for a few years. All is well on that front and I was feeling pretty good mentally until all this happened. As for antibiotics, I've been on 4 since November, 3 of those in the last month. They were, in order: Zithromax, Bactrim, Rocephin and Avelox. I finished the Avelox 2 weeks ago.

I have had some weird skin things going on as well: a dry scaly rash in my eyebrows that creeps across my eyelids intermittently. This has come and gone for over a year. I also can no longer wear my wedding and engagement rings. They destroy my fingers. The finger that my engagement ring was on until about a month ago is still red, flaky and oozy.

Last year I was treated for dry eyes. It cleared up but recently has returned.

My marriage is healthy and happy, my children are bright and thriving, my extended family is well and I am happy in my job and my community. We are financially secure. We belong to a church community that is supportive and caring. My life would be perfect if I weren't so sick!

The reason I haven't switched primary care doctors (and yes, I think she does think I'm sort sort of hypochondriac) is that the last thing I wanted to do after getting this far was start seeing someone new and have to start from scratch again. This Friday is basically this doctor's last chance. If anyone knows a good doc in the Worcester MA area who takes United Health, I'm all ears. (those at least are healthy)
posted by Biblio at 8:30 PM on March 21, 2007

Has anyone checked you for Lyme disease?
posted by owhydididoit at 8:40 PM on March 21, 2007 [1 favorite]

Good call, owhydididoit. Especially in MA.
posted by Goofyy at 9:23 PM on March 21, 2007

get yourself checked for Systemic Lupus Erythematosus as well. It's got a thousand different symptoms, but muscle/joint pain, facial rash, and young female are pretty strong associations. I'm not saying you've got this, but make sure to request that you get tested for this next time you visit your doctor. (specifically for anti-nuclear antibody.) -- see web for a lot more info about it.

also get that mental health/anxiety/add rechecked out. you might have to change your medication for that. make sure that's not making things worse.

best of luck!
posted by ruwan at 9:27 PM on March 21, 2007

With apologies to all the kindhearted diagnosticians above, the last thing you need is a, ummm, rash of people suggesting you might have x syndrome. What I think you do need is, in your own words, to start from scratch again with a new doctor (preferably a referral from a friend or coworker) who will listen to your background and symptoms, take a full history, and treat you with as much respect as any patient — especially one with worrisome concerns — deserves.

If it turns out medicine can't help you, or your symptoms abate, at least having additional opinions (and options) should ease your mind.
posted by rob511 at 9:45 PM on March 21, 2007

Best answer: Robert Angelo writes:
I suggest that you write out all your concerns
This is excellent advice. You want bullet points: a simple description of the symptom, and a little space underneath where you can write what the doctor tells you. Be obvious about what you're doing: "So you're saying, 'my vomiting is probably because of blah, blah, blah, RIGHT?'" as you write down "blah, blah, blah."
Confirm at the end: "Well, I know I seem to have a lot of weird symptoms, but I guess we've covered them all. I feel much better knowing that you're on top of it, and I have nothing to worry about!"
When it becomes clear that you're taking notes, the anti-malpractice training should kick in. Offer a copy of your notes when your visit is over. If nothing else, you'll have a great lawsuit, which you can use to pay for competent medical assistance.
posted by spacewrench at 9:48 PM on March 21, 2007

Ruwan beat me to it.

My first symptoms of Lupus were extreme joint pain - completely out of the blue one morning I woke up feeling like every joint in my body was on fire. It went away after a day and a half, but a few days later I had a high fever and was throwing up, followed by chest pain. Luckily, I went to a rheumatologist early in the game and was diagnosed with SLE.

Like everyone else said, get another opinion pronto, and best of luck to you!!
posted by Oriole Adams at 10:11 PM on March 21, 2007

A lot of times docs can use your help in organizing stories like this, especially when they're complicated. I take care of a lot of folks with complicated illnesses and sad to say, when they or a relative take the effort to organize the information for me, I can do a much better job as a doc.

One way to do it would just be to print out your AskMe question and take it into the doctor. It's a pretty coherent story and while it doesn't immediately suggest a diagnosis to me (especially not knowing what they've already tested you for), it makes it pretty clear that something's wrong.

If you can actually reduce it to a set of bullet points - dates, symptoms, tests, results - that fit on one page, you will be empowering your doc to do the best she can with the information you have for her.
posted by ikkyu2 at 10:17 PM on March 21, 2007 [3 favorites]

It may seem a little offside but have you ever had a false positive on a Syphilis test? Lupus often causes false positives for Syphilis in about a third of the cases. A friend of mine had Lupus for a very long time before getting diagnosed. After the diagnosis, her false positive for Syphilis when she got married made a lot more sense.
posted by MasterShake at 12:09 AM on March 22, 2007

One thing you can do yourself, without any outside input: test yourself for food allergies. It's possible that you're reacting to something in your diet. It might be a bit of a longshot, but it won't hurt you to try it.

Basically, for a couple of days, just drop back to white rice and maybe tea if you need caffeine. See if your symptoms improve. If they do, start adding dietary items back in, one at a time. Also try processed food versus 'natural' food. If canned chicken soup gives you trouble, make your own chicken soup to see if the additives (like MSG, which is in virtually all prepackaged food) are setting you off.

If you remain sick on rice plus tea, try cutting out the tea for a day or two. If that doesn't help, it's probably not food allergies.
posted by Malor at 3:46 AM on March 22, 2007

(oh, also: make sure it's just plain white rice you cook yourself, not prepackaged with additives.)
posted by Malor at 3:47 AM on March 22, 2007

Nothing more to add on the doctor/illness front - everyone seems to have covered it. I did want to wish you well though.
posted by jerseygirl at 3:52 AM on March 22, 2007

...start from scratch again... You have said yourself what would probably be the best thing to do. Although your anxiety may tend to make you overstate your symptoms, things like an abscessed lymph node are not the product of your worry. I agree with those who say not to put too much faith in the well-intentioned possible diagnoses here; there are a number of things that anyone with a little knowledge could speculate on but without knowing more/doing a real history and physical they are just more likely to give you additional things to worry about.

One other thing to consider is going to an academic medical center if that is an option. Those places are staffed with medical students and residents in addition to attending physicians, all of whom would love to be the first to solve a complicated medical puzzle and impress the rest of the team. (I hate to make it sound like a game, but that's kind of the way it is, and the patients do benefit from a little competition.)
posted by TedW at 5:16 AM on March 22, 2007

I have an auto-immune disease and was (luckily for me) diagnosed even before I was willing to accept the diagnosis. That wasn't the case for a lot of people I know. My cousin has Lyme - it took 3 1/2 years for them to finally diagnose him, by which time, permanent neurological damage was done. I had a friend who felt "not right" for quite a while. Her doctor dismissed her symptoms. By the time she was diagnosed with advanced lung cancer, there was nothing they could do.

What I am saying is, do not depend on one doctor to find out what is wrong with you. They're only human. Some are uncaring and incompetent, others are quite good but need a specific set of symptoms to diagnose. Sometimes, you find a diagnosis by dumb luck. But don't give up. Advocate for yourself until you know what is wrong. Find a new doctor. Make it clear that you won't go away. Oozing fingers, fever and vomiting are not normal. It boggles the mind that any doctor would imply they were.
posted by clarkstonian at 5:42 AM on March 22, 2007

Best answer: Biblio, I am rooting for you in your search for an answer to your question. This response is long.

A couple of years ago, I was in a similar situation. I was always getting sick. As soon as one infection cleared up, another started. I realized that two of the four doctors at my primary care physician's office thought I was faking half the time. I now refuse to see those two and they all finally believe me when I say I'm sick.

When you go to visit a doctor, you probably notice that they flip through the first few pages of your file to see what your most recent history is. This does not give them the full picture. Unfortunately, you are one of many patients the doctor will be seeing today and that makes it much harder for him to pull all the facts together. It is not that they are negligent or forgetful. It is simply a matter of how many things can they pay attention to at once. On the other hand, you have only one patient to worry about; yourself. You have the full picture of your health history. Yes, the doc may have it as well in the chart, but they do not have the bandwidth to review everything from the last year or two to get it quickly. This is why ikkyu2's point is so important.

The bulleted list will concisely pull it all together for the doctor and let him see the full picture. Give a copy to your doctor. Keep a copy for yourself.

Other things I've learned in dealing with a tricky diagnosis that no one was inclined to believe:

1. Always take notes. I take notes when I go see my primary for a sinus infection. I take notes when I see my hematologist or my immunologist.

2. Take your notes with you to subsequent visits. Something may be said which refers to a previous visit.

3. Ask questions. If the doctor is throwing medical terminology at you that you do not understand, ask for an explanation. If you don't know how symptom A is or is not related to symptom B, ask.

4. Ask for copies of your test results. I keep a copy of my results and share a set with any new physician I have to see. This was HUGELY helpful in bringing my hematologist up to speed. Not only did it give him a picture of what had been tested for, it also gave him results to compare against. You should be able to get your results from your physician, the hospital and/or the lab which processed them. I called the lab and they mailed me a copy of every test for me they ever did.

5. Specialists are worth it. The hematologist will be able to look at your test results in a different light than your primary care physician. This was an amazing difference in my case. Primary care physicians are great, but they don't know all the fine details that a specialist will know.

6. Do your own research but DO NOT freak out over what you may find. Make yourself aware of the possibilities but wait (I know it is hard) for the diagnosis from the doc. Your research should help guide your questions and increase your understanding of your condition and treatment options.

I find, as a self educated patient, that I am able to discuss the diagnosis with my doctor. I am not told "take two tablets and call me in the morning." I am viewed as a partner in my health care. Also, this spills over into the care for my son. Fortunately, he does not have my health issues and is an amazingly healthy kid. However, because I have to know my own medical history and the family's history because of its implications to me, I can quickly and concisely provide a doctor with a family medical picture.

7. Ask for intervention. If you can not get into the one hematologist the physician recommends in a timely manner, ask for a second referral or ask the physician to call and request an earlier appointment.

8. Call a conference. If you have been dealing with more than one doctor, you may need to get them talking to each other. Their insights and discussion can cause a break through in their understanding of your health. My immunologist started this with my physician. This lead to my referral to the hematologist. Now, my hematologist speaks with my physician every time I see him. I can not tell you just how much this has facilitated better care from my physician and his staff.

Finally, you are not crazy and you are not faking it. The doctor just needs to see the full picture the way you do. Instead of booking just an office visit, consider booking a longer consultation appointment in which you review your bulleted list.

Best of luck to you and your family as you search for the answer.
posted by onhazier at 6:17 AM on March 22, 2007

I am viewed as a partner in my health care.

onhazier makes a number of very good points but this is perhaps the best. Far too many times I see patients who are passive and unquestioningly accept what they are told on one extreme or adversarial and skeptical of everything on the other. Neither situation is conducive to good medicine, especially when there is a difficult diagnosis to sort out. Just like finding a compatible partner in other areas of life requires some looking, finding a doctor you may be seeing regularly for many years to come might also require a few failed attempts before finding the right one.
posted by TedW at 7:04 AM on March 22, 2007

Response by poster: You guys are fantastic. I will spend the day making up my bullet pointed list and I will request copies of all my labs.

I should have mentioned before - I do not have Lyme, CFS, Epstien-Barr or Mono. I saw a Neurologist in the hospital and I checked out fine with her. I have never had a positive dx for Syphilis or any other STD. My liver function and white cell counts are normal.

Thanks again for the advice. My anxiety (98% controlled by my meds) doesn't seem to affect how I perceive my symptoms, but it does affect how I deal with authority figures. I am only too willing to back down from a doctor because they "know best."

Oh, and as far as a teaching hospital, I am a patient at UMASS Medical Center. I may end up having to go somewhere in Boston instead.
posted by Biblio at 7:09 AM on March 22, 2007

I don't have anything to add to the above comments. I was sick for over a year and went to many many doctors before I was finally diagnosed with asthma. I know how much it sucks to not be listened to, and how depressing it is and how helpless it makes you feel.

After that shitty experience, I'm a much more agressive advocate for myself when I'm sitting in the paper gown.

All I can say is: don't leave the office on Friday until you get some results or a referral to someone else. Your situation sounds pretty horrible.
posted by misanthropicsarah at 7:20 AM on March 22, 2007

If you wouldn't accept this kind of medical treatment for your kid, don't accept it for yourself.
posted by selfmedicating at 7:36 AM on March 22, 2007

I am not a doctor, but many of your symptoms
mimic what my wife has -- fibromyalgia. A lot of doctors don't know how to diagnose it and/or don't believe it exists, but the hip pain thing really resonated. She went through the same stuff -- not mono, etc. She didn't get diagnosed until she saw a rheumatologist, and I would strongly suggest you see one as well.

Could be nothing, could be something else entirely. But man, do I feel for you. I know the frustration, believe me. Hang in there and get better!
posted by Atom12 at 7:39 AM on March 22, 2007

I'm unable to resist tossing another uninformed diagnosis into the ring: ulcerative colitis is a form of inflammatory bowel disease (IBD, not to be confused with IBS, which is much less serious). It is similar to Crohn's disease. It presents with all sorts of wierd symptoms. Dry eyes and skin problems are classic.
posted by selfmedicating at 8:03 AM on March 22, 2007

Since you mentioned diabetes in the family but didn't mention being tested for it in your follow up message, I would add that you should rule that out if you haven't already.

Please note that the fasting test and random tests are not the gold standard. If you have had a negative (i.e. "not diabetic") fasting test, ask about getting a glucose tolerance test. Specifically mention any and all relatives with diabetes.

A never-ending cold topped off my a never-ending yeast infection is how my mom ended up with her diagnosis. She had previously passed both random and fasting tests, but failed the GTT big time.

Please follow up with us, if you don't mind, of course.
posted by peep at 8:51 AM on March 22, 2007

(it's amazing to watch how helpful pysicians become when they smell "malpractice lawsuit" in the air).

Yes, we get extremely helpful. We let patients know it's time to find a new doctor. You folks out there that keep mentioning lawsuit fail to understand that the patient does not own the doctor. Biblio's doc has not committed malpractice because he/she hasn't given her a dagnosis. The standard of care has been met. Any mention of legal action and I assure you Biblio will be terminated from the practice immediately.

Biblio, it sound like you've had an extremely thorough evaluation. I would also suggest seeking another opinion, but remember that in many cases medicine is better at determining what is not afflicting you than what is. Hang in there. Many times it's best to keep reassuring yourself that voluminous testing has failed to turn up anything sinister. The body is quite adept at returning itself to it's prior level of good function. Keep focussed on adequate rest, good diet, etc. Keep regular follow-ups with your doctor until this seems like it's reaching a point of resolution, or request a referral to a new MD.
posted by docpops at 9:00 AM on March 22, 2007

I empathise with you. I was sick with some mystery malady a lot like yours for over a year, tested for everything in the world, and they came up with nada. There's a med school adage: "When you hear hoofbeats, assume it's horses and not zebras." This is a rational approach, but there _are_ zebras out there sometimes.

You said you've put on weight recently and you mentioned the skin rashes and the diabetes in your family. Have you been to the ob-gyn recently? Maybe you could be tested for PCOS.
posted by veronica sawyer at 9:00 AM on March 22, 2007

Any mention of legal action and I assure you Biblio will be terminated from the practice immediately.

Really? My patients occasionally mention that they're thinking about suing me or others for malpractice. "It's a free country," which is usually what I say to them. But usually that's a time for me to reaffirm my commitment to trying to help them get better. I generally don't think malpractice suits help patients get well and I might mention that too. Often it's a time to suggest getting a second opinion from another doc at another place, but I don't think I've ever dropped a patient because of this.

I am always pleased to hear when one of my patients drops me and starts going to another doctor. I figure that means the patient wasn't getting what they needed from me and maybe they will get it from the new doc. This is hardly unusual, every doc learns to deal with it, it is part of the practice of medicine.
posted by ikkyu2 at 9:14 AM on March 22, 2007

Shoot, I neglected to actually offer my answer to your question. When I _was_ sick, I made a point of telling my doctor (and the infectious diseases specialist) that I wasn't trying to self-diagnose, that I believed there could be a rational, mundane explanation for my illness (that I might never discover) and that I didn't believe I had any Oprah "diseases of the week"-type stuff. Basically, I went out of my way to both express my concern for my health but to also assure the doctor that I wasn't already convinced about what I had.

(Ultimately it went away, finally, after I went on a diet, forced myself to exercise despite the fatigue, and went on anti-depressants. I'm still not convinced that this correlation equals causation).
posted by veronica sawyer at 9:20 AM on March 22, 2007

Well, ikkyu2, you're a better man than I am.

When I am doing everything within my power to help a patient and start to hear rumblings of lawsuit from the patient or family, I tend to start thinking of the other two thousand patients I have that can benefit from my care and trust me to do right by them. It's not a malicious act to terminate a patient. I've witnessed colleagues get sued over situations where there were warning signs of trouble well in advance of the actual suit. And as you know, a meritless suit has as much potential for damage, monetary and psychological and professional, as one where harm has occurred. So when a patient or family lets me or my staff know that they consider me their personal property at the end of a legal threat, the gloves come off.

I tend to think that the rest of my practice, as well as my family, would agree. But I do indeed respect your Zen-like approach.
posted by docpops at 9:33 AM on March 22, 2007

I had many of the same symptoms that you are having a few years ago, and it turned out to be Cat Scratch Disease, AKA Cat Scratch Fever. Apparently the disease can vary wildly in severity and duration. It is often confused with mononucleosis (because of the exhaustion, body pain, and lymph node issues), but I had mono as a teenager and the fact that I had light scratches up and down both arms from my roomie's insane almost-grown cat (my fault, I like to antagonize kitties) made the doc decide to test for CSD. I had it pretty bad, but it eventually went away without treatment (the doctor offered antibiotics, but said they probably wouldn't do much, and they tend to make me really nauseous so I decided to go without). Just thought I'd mention it as something you might want to check out if all other diagnoses fail.
posted by cilantro at 10:55 AM on March 22, 2007

You mention that your sister, your closest relative, had Henoch-Schoenlein Purpura as a child and a teen. If you read the linked eMedicine article, you will see many of your symptoms, including arthritis, petechiae, dermatitis and swelling of limbs. Also, onset typically follows an infection, and can apparently also be set off by antibiotics, including erythromycin, of which Zithromax is a synthetic relative. The major long term danger to health seems to come from kidney involvement, which is not uncommon in adults.

I would think that emphasizing close family history of this fairly rare (10-15 per 100,000) disease, particularly since your sister had recurrences, and the fact that you have many symptoms, and a typical pattern of onset, would grease the skids for getting to a rheumatologist. I would absolutely insist upon appropriate tests for kidney involvement without delay.
posted by jamjam at 11:43 AM on March 22, 2007

I also suggest a rheumatologist. I have a wacky joint pain syndrome myself (ankylosing spondylitis), and I was lucky enough to be diagnosed by my GP within 5 years of onset (seems like a long time to live with mysterious pain, but it's great compared to how long people often live with AS before diagnosis). That said, I probably would have been diagnosed much sooner if I'd gone to a rheumatologist from the start -- they specialize in this kind of problem, and they have more experience with the wide variety of joint symptoms and related syndromes. A collection of symptoms that mean little or nothing to your GP may seem obvious to the rheumatologist (or, to be fair, vice-versa). Don't rule out specialists, particularly if you're not getting the proper amount of support from your GP!
posted by vorfeed at 12:54 PM on March 22, 2007

Response by poster: What confuses me is why when the hospital doc said "see a rheumatologist" for the same reasons many of you seem to be saying the same thing, my doctor turned around and sent me to a hematologist. I asked her about it and she said that maybe that's how they did it in the small local hospital that I was in, but that's not how they do it at UMASS!
posted by Biblio at 3:29 PM on March 22, 2007

I have nothing to add to the above suggestions except to add my standard comment that you should start thinking of the quality of service you get from your doctor as at least as important as the quality you get from your car mechanic.

And you can replace a car.

Seriously - would you still be taking a vehicle to a dealership where you had this level of satisfaction?

Go see another doc.
posted by phearlez at 10:26 AM on March 23, 2007

Response by poster: Well, I went to my doctor today, armed with my typed up list of symptoms. To my complete surprise, my doc was extremely helpful and spent an hour with me going over everything on the list and ordering more tests. I don't know...maybe I caught her on a bad day before. She explained the test results I'd gotten in the past and what she was looking for in the new tests. The initial test they did that would normally trigger looking into Lupus was normal, which is why she hadn't referred me to a Rheumatologist. So the tests she ordered today are along the same lines but more in depth, so that will give us a better clue about what's going on.

The most amazing thing is that one of the symptoms I told her about, which was the very last on my list because it seemed so out in left field, was the one that made her say "ah ha!" I have dry eyes, because I don't make enough tears. It's something I've been treated for by my eye doctor, and it never occurred to me that it might be related. But it's a symptom of an autoimmune condition called Sjogren's Syndrome, which causes inflammation of glands in the body, including the ones that produce tears. It often goes along with other autoimmune disorders. This is a very promising line of inquiry.

She also poked around my spine and found a spot that is excruciating to the touch, so I have a lumbar MRI on Monday morning to check for a herniated disc, and a follow up appt. with the doc a week after.

Thanks all, for your advice and encouragement. I felt much more confident going in there today. I will keep my options open as far as my doctor goes, but as of right now I think she is doing what needs to be done, and I think she got the picture today that I am expecting to be a partner in this.
posted by Biblio at 2:23 PM on March 23, 2007

I don't know...maybe I caught her on a bad day before.

Don't underestimate the usefulness of your typed-up list of symptoms. It's possible that you might not have any idea how useful it is. Ordinarily docs have to extract information from their patients by laborious questioning, and somehow try to mentally order all this information into a story that makes sense.

If I have an hour long visit I usually spend 45 minutes in this process. If my patient telescopes that into a list that takes 2 minutes to read, and then I spend 5 minutes clarifying the info, that's 38 extra minutes I have to spend actually thinking about what might be wrong.
posted by ikkyu2 at 4:35 PM on March 24, 2007

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