Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Thank you MM! Wow, that is a LONG time to be "suspect". I bet it drove you crazy to be in "limbo-land" that long. But of course, you had plenty of other diagnoses to keep you busy and feeling poorly. It's so hard to separate the symptoms of one from the symptoms of another. So many of these auto-immune issues overlap, or mimic one another. I totally thank you for the encouragement and advice about taking charge of my health and my body.. I have been through many, many doctors and insisted on tests and told them what my problems are very clearly. I have a big, fat notebook with all test results and reports from tests, doctors, lists of prescriptions, etc. I have a 4 page summary sheet that I hand each and every doctor when I first see them. I probably would just have given up long ago - shut up by a prescription for anti-depressants and a muscle relaxer. Neither one helped (in fact I owuld dare to say they damaged me more...) so I followed my own insttinct, quit and insisted they keep looking. What I mainly wonder about though is how do you get the doctors not to blame eveything on your primary diagnoses - the one you got first? I have met some very dumb endocrinologists and rhuematologists over the past 4 years. It sometimes seems like they can't see the forest for the trees. It seems as if some people are diagnosed very easily. I've heard of people getting a diagnosis on just a postiive ANA which I know is irresponsible of a doctor, but then others spend years (hopefully not 30 like you...) trying to get answers. I'll be sure to keep you updated on that appointment at Loyola, and I'm sure I will have plenty of questions to come . Thank you, Kate Re: KATE'S INTRO Kaate, Welcome. I was "Lupus Suspect" for over thirty years! So, you are not alone in that. Also,while I had dx's of Rheumatoid Arthritis, Myofibrositis, Anemia, Type II Diabetes, chronic LymeDisease, Sjogren's Syndrome, that word "suspect" was appended to the initials SLE until just this lastyear. I started having symptoms at ten years of age, and didn't get an actual dx on any of it untilI was 30. As you can see, it can be a very lengthy, frustrating process.While you wait for that definitive DX, insist on being treated with respect, being heard, and takingcharge of your health. YOU are the one who really knows what your body is doing, and how it feelsto be living in it. YOU are the one who must continue to live in that body. Most of us have found itvery helpful to make lists of questions we want answered when visiting the doctors, lists of currentsymptoms, medical history summary, current list of medications and allergies. I know it sounds likea lot of paper to carry around, but believe me, it can cut the time necessary for paperwork in a newdoc's office to almost nothing if you have all the information at your fingertips. I have even beenknown to send it ahead of a first time appointment so that the doctor is "in the know" before I getthere. Any doctor worth his salt will welcome the information and be grateful for the heads up.If they are resentful, or ignore your info, then you may have to look for another doc, and fast.Take as much information as possible with you to Loyola. They will need all they can get. Let us know how it goes, and how we can help. Hugs, MM aka: Mike, one of the moderators "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
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