Diagnosing yourself. ( medical)

Parent Cafe
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<p>I need help figuring out how to present some information I have gathered to my Dr.</p>

<p>( my main Dr is an internist- whom I only started to see about 5 years ago, when my insurance company quit covering my naturopath- but I am seriously considering changing back to my naturopath because she has good contacts with allopathic specialists in the area & my internist has given me referrals to Drs that I haven’t been impressed with- )</p>

<p>Over the past few years I have been getting basic care ( Paps, etc- also more), but have been mentioning other things that have been bothering me. They didn’t really seem connected, and she didn’t seem concerned , just wanted me to notice if they became a lot worse. ( I admit since I have high pain tolerance, I haven’t forced the issue but for me to even mention something it is a big deal)</p>

<p>Over the past months some symptoms have gotten a lot worse, but although I am being treated ( with an antibiotic which hasn’t lessened symptoms at all), I started doing my own research and was surprised to syndrome that seems to encompass all my symptoms especially the ones that are most severe.</p>

<p>Of course there isn’t necessarily a test that can rule it out or not, although it looks like with multiple tests you could have reasonable assumption of a diagnosis.</p>

<p>I am pretty convinced I have an autoimmune disoder called Sjogren’s Syndrome. I have most of the symptoms, a few, severely enough that I can’t function normally. :(<br>
But since I wouldn’t want my internist to manage my care, even if she agreed that was what I had, should I change Drs now, or should I wait for an official opinion ?<br>
What do you do?
Bring a notebook of articles and dump it on their desk?:o</p>

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<p>I would suggest seeing a rheumatologist if your symptoms seem to parallel that of Sjogren’s. He or she will test you and let you know if that’s in fact what you have or if it might be something else that mimics it which is quite possible.</p>

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<p>Sort of a tough diagnosis to make. Not a lot of slam dunk relief. How do you feel diagnosis would change things?</p>

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<p>emerald, I have Sjogrens. I’ll PM you.</p>

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<p>Does your insurance require a ‘gatekeeper’ physician to permit payment for other specialists?</p>

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<p>I agree with twinmom; consult a rheumatologist who will run the battery of tests you referenced which may or may not diagnose you. Be aware that the family of auto-immune disorders (lupus, RA, scleroderma, Sjogren’s, mixed connective tissue disease)share similar symptoms. </p>

<p>As an aside, I have been monitored for the past 15 years for symptoms that consist of swollen joints, sore joints, mouth sores, etc. At various times, my ANA was up, then down, rheumatoid factor up, then down, complement levels off, etc. Luckily, after a period of time (sometimes weeks, sometime months), my symptoms acquiesce and life goes back to normal. </p>

<p>My rheumatologist is wonderful and I trust her completely; if your internist refers to someone you’re not comfortable with, keep looking. Good luck!</p>

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<p>I also have sjogren’s, but it’s in the benign state for now. I love my rheumatologist, seeng him about once a year just to make sure things are still okey-doke. I hate taking meds but finally consented to begin taking something that increases saliva production (really, the only symptom I’ve had) after my most recent visit when he told me my dental issues could be caused by the lack of saliva. I’d much rather take a pill than have another root canal!</p>

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<p>You may want to rule out fibromyalgia as well.</p>

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<p>Well emeraldkity4, a dear friend is a quadriplegic. He found a doctor he really wanted to work with but who didn’t have experience working with quads. He made an appointment and brought him a book written by paralyzed men and women, the people who love them and experts in the field. It’s a “handbook” of sorts. Doctor took same book and a week later contacted quad, with an emphatic thanks and a request for more. Quad & he developed a rapport. That was 15 years ago and they continue to be patient and doctor. Teacher and learner. And the titles are interchangeable. The Medical Doctor has continued to study and learn and the “patient” is in great hands. Sometimes they learn together.</p>

<p>So sure, why not provide the doctor with details you’ve gathered. Give her a chance.</p>

<p>Teach her what you need from a physician. You just might end up with the best ever.</p>

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<p>A couple of things as a very soon to be physician (although I’ll be doing my residency in pediatrics starting in July).</p>

<p>1) You as a patient are always your own best advocate. If you feel like your needs aren’t being met, you need to speak up. If you feel that you aren’t getting enough time during a normal clinic visit, ask if you can set up a longer appointment and discuss your issues. It’s a common problem, especially for really busy internists, to get focused so much on moving patients in and out, trying to treat and manage, that developing a relationship gets put on the back burner…but if you don’t speak up that this bothers you, no one will ever know and you’ll just get more and more frustrated.</p>

<p>2) If you’ve not been happy with the specialists you’ve been referred to, again, speak up. Typically, most docs refer to specialists they know and like working with (possibly from medical school or residency) but if patient needs aren’t being met, that’s never your only option. </p>

<p>3) Mark Twain said “be careful what you read in health books, you may die of a misprint”. It was true when he said and probably even more true now. Most physicians cringe when patients come in with rare diagnoses they’ve found on the internet, but if you at least bring in the print outs from reputable information sources, it provides at least some piece of mind that you’re getting reliable information.</p>

<p>4) It’s okay to get second opinions and any doc that discourages such a practice is probably someone who should not be your caregiver for much longer.</p>

<p>5) If things really aren’t working, it’s okay to switch providers. We’re talking about your health here. But beware - patients who habitually “doctor shop” make most physicians very uneasy (you’ve seen 14 doctors and you expect me to be the saving grace?). So don’t be that patient.</p>

<p>6) Rheumatology borders on voodoo and astrology in terms of making sense out a surprising number of not very good tests…seriously, the combinations of autoimmune blood markers are usually about as clear as mud, but a good rheumatologist can be worth their weight in gold. If you don’t need a referral from your primary care provider, go ahead and schedule an appointment…but I’d let your internist know.</p>

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<p>See [Sjögren’s</a> Syndrome Foundation](<a href=“http://www.sjogrens.org/home/about-sjogrens-syndrome]Sjögren’s”>http://www.sjogrens.org/home/about-sjogrens-syndrome) - [Diagnosis](<a href=“Diagnosis”>http://www.sjogrens.org/home/about-sjogrens-syndrome/diagnosis&lt;/a&gt;) and the [MayoClinic.com](<a href=“Sjogren's syndrome - Symptoms and causes - Mayo Clinic”>Sjogren's syndrome - Symptoms and causes - Mayo Clinic) entry on Sjogren’s.</p>

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<p>We have had more than our share of docs & chronic health issues in the past 10 years. The MOST important thing for us is a doc who really CARES & will work to help us find answers and treatments that are effective. We have been referred to many, many specialists, as far away from HI as a small town in NY & also in Denver & USC. We have had the best treatment by the docs who really CARE & are willing to work with us, regardless of their official specialty.</p>

<p>We’ve seen 7 pulmos, 5 GIs, 6+ allergists, 4-8 cardiologists, a surgeon, a sleep specialist, a CFS specialist, rheumatologist, enchrinologist, geneticist, several others whose specialties I forget, several family practitioners, several internists, multiple counselors, and consulted with even more over the past 10 years.</p>

<p>The allergist has stuck with us thru thick & thin and has done research on her own to help us figure out how to treat what all the other docs threw up their hands & gave up on. I am totally in awe of her & how much she cares for us & her many, many other patients.</p>

<p>The other doc that has worked well for us is a very young doc who was willing to work with a specialist we have found in Denver, as well as the internist & allergist. The attitude is so important.</p>

<p>A GOOD rheumatologist does see a lot of patients that other docs can’t figure out.</p>

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<p>Thanks for those links, my2cents. I learned something!</p>

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<p>Though it is good to be researching ones own symptoms and collecting information, I would always have my diagnosis officially confirmed. You don’t want to treat yourself for something you do not have as it can be dangerous. We had a mistaken diagnosis of a fungal infection on my son’s arm last year, and the ointment used exacerbated the rash/sore, as it was not the right diagnosis. That was a physician’s misdiagnosis. But I agreed fully with it. </p>

<p>I am pretty sure my MIL has narcolepsy. Have suspected it for years, but it was a mild enough case that it was not worth pushing it. Now she suffers from cataplexy which is common in narcolepsy, and has been causing problems as well as scaring people. Though I have told the doctor my suspicions to get them to check for this condition first, I would not have treated it myself just on my hunch, even if it means using homeopathic things.</p>

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<p>Emeraldkity4, have you seen your doctor? Any updates? (I just saw your thread about “black floaty things” and was reminded.) You need a good ophthalmologist.</p>