Discussions By Condition: I cannot get a diagnosis.

What in the world is -wrong-?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: St.Trillian
  • April 5, 2009
  • 10:43 AM

I have been having trouble for -years- with various symptoms.

My most recent 'round' with doctors:

I went to the doctor over a year ago with largely the same troubles I have long had...random, stabbing back pains in various places, recurrent bursitis in my right hip, tremors in my left hand (like I'd been carrying something heavy but had not), sometimes bone crushing fatigue. I have had migraines since I was 13 (I am now 36). I had also started having eye infections rather often. I have bouts with loose stools and a lot of gas. I sometimes sweat a lot at night. My feet puff up sometimes. I have had more kinds of tendonitis than I can count. The doctor basically threw a bunch of really expensive tests (and specialists, including a Rheumatologists) at me (2 MRIs for hip and low back, 9 xrays, a bone scan, multitude of blood tests( ANA titter, tyriod, etc)...). At the end of the day, she told me I was depressed (which 'caused some fibromyalgia') and that was that. Unfortunately, I lost my insurance last summer and could not afford to contiune that rat race.

Last fall, I broke out in a really nasty case of hives for the first time in my life. They started around my neck and over the course of three weeks, 'traveled' down my body to my knees. During this time, eye issues revved up into overdrive and I started to -constantly- feel like I had something in my eyes to the point they hurt so badly I couldn't open them, and I could not get it out. I ended up going to an ER after the first week. Doctor there said it was an allergic reaction and 'allergic conjunctivitis', gave me a prescription, and I went home. I dutifully took what he gave me, but I noticed that my sight got really blurry and the 'something in my eyes' feeling wouldn't go away. It got so bad I literally couldn't open my eyes. I ended up going to an ER again...this time, the doctor said I had iritis and 'pits' on my corneas and told me to go see the specialist on call that night. She, in turn, told me that the 'something in my eye' feeling was filimentary kerititis, and that it was a sign of some underlying autoimmune disorder. Again, unfortunately, I am uninsured and gunshy of doctors after being given the run around time and time again, and could not followup.

CLEARLY, I am not merely depressed, however, though I do agree that I have bouts of depression. Much of my depression comes from being uncomfortable all the time! Certainly does not explain everything.

I am about to 'embark' on doctors again, being still in pain, still having dry eyes and foreign body feelings in them, still having all the same trouble previously described, and often worse. What I want to know is what could all of this be? Clearly I am not communicating with doctors in a manner that's helpful. How do I go about it? What should I do?


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3 Replies:

  • Have you been checked for Sjogren syndrome?
    Anonymous 42789 Replies Flag this Response
  • I know it's extremely tough, but don't let them beat you (Doctors) as you're the one who has to live in this constant state of pain. Find another Doctor if you can and if that one can't help find another. Having a supporting Doctor really does help (even if they don't know what is causing alll these issues) but one who is willing to continue to explore possibilities with you. I wish you the best of luckBig Hugsxxx Sammyhttp://www.undiagnosedillness.org
    Anonymous 42789 Replies Flag this Response
  • I am sure communication is not the problem. At least not on your part. You can't help it if the doctor won't listen to you. I had one doctor tell me I have to many symptoms and he only allowed me to tell him my worse symptom. I was not allowed to tell him 2, just 1. He then gave me a perscription for an antidepressant (which only one pill and I was very ill). I share that with you to let you know you are not alone. Based on some of the diagnosis' I have received, I am surprised these men were smart enough to make it through medical school. As for you, I would try a different rhumatologist.
    halal37 96 Replies Flag this Response
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