Discussions By Condition: I cannot get a diagnosis.

Lesions in mouth w/flu-like symptoms

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • March 12, 2010
  • 10:12 PM

I am a 35 year-old female in relatively good health. In June 2007, I had an erruption of lesions (20+) in my mouth that would not go away. At first I thought it was just cold sores/mouth ulcers, which I have had many, many times, but these felt different, hurt differently, and again, would not go away. They became so severe that I could not eat and could barely talk. They mainly affected my tongue, but felt like they were in my throat as well. I went to my PCP after about 4 weeks. He put me on an anti-inflamatory - with no success. I went back to him and he put me on Valtrex, again, no success. Again I went back to him and he put me on a round of steroids. After 3 days, they were better but quickly returned once I was off the steroids. After seeing several other doctors/specialists (who did nothing), my PCP sent me to a dermatologist. She did biopsies and diagnosed me with oral erosive lichen planus. She put me on methotrexate and high-dose steroids. Long story short, I had to stop taking the medication after a few months due to a severe drug reaction to the steroids.

The lesions of course came back and continued to mainly affect my tongue. Each time they flare up, I also have flu-like symptoms (achy, fatigued, just overall "I'm getting sick" feeling). In early 2009, continuing my quest for relief, I went to an oral surgeon. He did biopsies (from my tongue this time) and had immunofluorescence testing done on the tissue. The results came back that it was something (lichenoid reaction?????mucosa????something), but it wasn't OELP. He seemed very unconcerned and offered no treatment or additional testing. I have seen a total of 9 doctors/specialists and I am still at square one. The majority of the 9 feel it is autoimmune, but that is about as far as they are willing to go to diagnose. The minority just calls it chronic aphthus ulcers (canker sores) and sends me on my way. I know it isn't canker sores - I have had those many times and it isn't the same.

I am still having flare ups (mild to severe) and still have the flu-like symptoms EACH time I flare up. I have also had 2 negative ANA tests for lupus (aside from the biopsies, that is the only other testing done). It does appear that stress can cause or worsen a flare up - I had just finished my 2nd year of law school when this all started and had a severe flare up recently after taking the bar exam, and there have been other instances when I saw the correlation between stress and the flares. I am currently experiencing another flare up - I haven't had solid food in almost 2 weeks. I have to find out (1) what is causing this; (2) what's the treatment for it; (3) how do I get relief? I don't know where to begin...again. Do I go the medical route or dermatological route? I have even considered the Mayo Clinic. Can anyone offer any advice?

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1 Replies:

  • Did you ever find a resolution? I have a family member with similar history & symptoms.
    dcrunner 1 Replies
    • September 20, 2013
    • 04:40 PM
    • 0
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