Discussions By Condition: I cannot get a diagnosis.

Ulcerated cysts only on face - LOOK AT PICS! - no diagnosis!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: roymom3b
  • March 30, 2009
  • 04:57 AM

My mom has been to 11 different doctors including doctors at the reputable Mayo Clinic and UAB in Birmingham. Nobody has been able to give her a diagnosis or treatment! These lesions begin as cysts on her face. They ulcerate and create "holes." They are painful, and her face is swollen. She has had these for 3 years and has had every kind of test imaginable with no luck. We think they started after a tooth abcessed, and a large golf-ball sized cyst was removed from inside her mouth. After that, these cysts started appearing - they're only on her face. Nine have been cut out, but they keep coming back in the same spot or very close by. There is one now on her lip that is basically eating away her lip. She is so depressed. Some of the doctors have insinuated that she is "picking" at her face and causing these herself!! I cannot tell you how helpless I feel! Please look at the pictures, and if anyone knows anything that might could help us, I will be forever grateful. One doctor diagnosed it as pyoderma gangrenosum, but that doesn't normally begin as cysts, and all of the other doctors said that was NOT it, sooo.......she is taking Dapsone, and it seemed to work for a while, but no more. Please help and God bless you.

Reply Flag this Discussion

2 Replies:

  • Not a doc but a microbiologist.I presume specimens have been taken and tested for Staph. aureus and its nasty form MRSA. Staphs can cause boils and Ulcers The ulcers look a bit like those you get with Tuleremia caused by the organism Francisella tularensis.If your mum has a systemic infection with this organism, ulcers could be breaking out.It is usually caught from wild animals by hunters who either get animal blood in a wound or more commonly are bitten by fleas or ticks of the animal they are dressing.Now i am guessing your mum is not a hunter but in my imagination the dentist could be and then he could have infected your mum.This is a bit unlikely but then so is electromagnetic radiation an unlikely cause.I hope she gets better soon:cool:
    chrismia 159 Replies Flag this Response
  • If the lesions only appear on the face in similar patterns to those depicted in the photographs, then it would likely be trigeminal trophic syndrome. It is rare and in most instances the lesions are painless, but reports of pain subsequent to the associated neuralgia are often confused with pain from the ulcerations themselves. It can sometimes be triggered by circumstances such as that described, but again it is quite rare. This would not be pyoderma gangrenosum because none of the tissue is necrotic. Tularemia is systemic and the lesions are not limited to the facial areas. And I needn't waste the breath to affirm for the millionth time that the symptoms are not due to cell phone use or microwave sensitivity under any circumstances whatsoever. My suggestion here is referral to a neurologist to determine whether trigeminal trophic syndrome may be present. Treatment is difficult and involves regimens using amitriptyline and diazepam in addition to chlorpromazine and pimozide, which have met with some success. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.