Discussions By Condition: Mouth conditions

Debilitating mouth ulcers for a year

Posted In: Mouth conditions 0 Replies
  • Posted By: tmcespn
  • April 9, 2011
  • 01:11 PM

Hi- I'm a 36 yo female who began having mouth ulcers the same week I had a diagnostic laparoscopy. For a year now I have dealt with these ulcers that come & go & leave me unable to eat, drink or speak for weeks at a time. There really is no rhyme or reason to them. They start small & eventually turn into ugly white patches & then I get ulcerations of my tongue & my gums get painful & inflamed. The only thing that helps is dilaudid & prednisone. I have been on acyclovir & colchicine which neither one helps. I take l-lysine & b vitamin supplements. The ulcers have been swabbed & biopsied with no clear pathology. I have since developed systemic illness with terrible fatigue, excessive bruising, lost 35lb, & terrible left arm pain & weakness. I have a couple of large lymph nodes that remain even when the ulcers fade. I have been tested for autoimmune & all is normal. Only tests out of normal are CRP, sed rate, lymphs & anemia. I have also had ulcers in my pubic hair area that have been cultured as well & show no evidence of HSV. I am now out of work because of all this & living on 1/3 of our normal income because my disability was denied because of all tests being "normal". I have been to every kind of doctor, rheumatologist, endocrinologist, oral surgeon, dentist, gynecologist, genitourinary, gastrointestinal (had upper & lower scope), orthopedist (had an injection in shoulder, no help really), neurologist, & of course my internist. I was hospitalized for 4 days for iv fluids, iv steroids & iv pain meds because of ulcers. I was diagnosed then with bechet's by my dermatologist & internist but then went to Hopkins vasculitis specialist (of course my mouth was fine that day). They did no testing & told my I have HSV & sent me on my way. I'm tired of it all & I need help. This is killing my family financially & emotionally. Anyone have any ideas?

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