Discussions By Condition: I cannot get a diagnosis.

Ulceric sores in mouth, throat, nose & on lips

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: candlefreak73
  • May 3, 2007
  • 05:28 PM

I have been having episodes or 'flares' since I was 17 yrs old. It started when I had a bad case of 'mono' or so the doctors thought at the time & it has slowly progressed over time to this day with sores throughout the mouth, throat, nose & on my lips. I was tested for herpes at all different stages of the sores which has never come out positive but was treated for 3 yrs with Acyclovir, never had it worked even increasing the dose during menstral cycles. I have tried older medications such as Cholchicine for Bechet's but still no better. I've been on all kinds of steriods, in which Prednisone does occacionally work if used in high doses but this is not recommended by my health care provider as it can cause other issues within the body. I used countless antibiotics and other medications but to no avail. I have been to Mayo clinic in Rochester, MN but by the time I get there for my appoinment the sores are past the 1st or 2nd stages and have been crusted over so not much has been done. I have been to the hospital in Iowa City as well to the dermatology dept, but they thought it might be Erethema Multiforme but I don't have all the symtoms. The closest they have come to is Lupus. In the last few years I have not only had the sores but I also become disorientated at times like a 'fog', forgetfulness, short term memory loss, traces of blood in urine, kidney pain, shortness of breath, chest pain especially when lying flat or in bed. Joint aches & pains but burning sensations in arms & shoulders. Sometimes instead of chills I get like a burning pain in my body like my 'blood is boiling feeling'. As I get older the symptoms are multiplying. Tiredness or fatigue seem to be an issue with me as well as clinical depression, hey wouldn't after all this! Current for the past 3 days my lower lip on the right side has been swollen & it looks like someone gave me a big fat lip, it is swollen & even with cold compresses or ice I cannot get the swelling to go down. Work seems to be a real difficult issue for me as well. I used to be in customer service which I can no longer return to because when I do get a flare I miss work due to unable to speak to people, let alone when I have shown up in the past to my work, I've been let go because my mouth begins to bleed & they don't want me there thinking it is contagious. My husband has never had any sores from me or my 2 kids. I'm becoming very weary that I will never have a treatment or diagnosis of this. I feel that eventually I will get to the stage of not wanting or being able to eat or drink. I have been in the hospital for this in the past due to dehydration as well. I hope someone out there has had this or currently has the same symptoms as me. I need to know that this is not 'all in my head'. Thank you to all who read this.

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2 Replies:

  • Dear candlefreak...go to www.ahummingbirdsguide.com look at symptoms...yours are all there...if that site is confusing...look for extended list of symptoms of Myalgic Encephalomyelitis...I'm being tested for it right now...I'm responding to you because I have same sx and many more...Good Luck and God Bless...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • PS they believe this virus to be associated with the herpes virus...I get cold sores before my period...it's not an ME symptom but it happens...it all makes sense...mouth ulcers are a symptom believe it or not...PLEASE check out the site I mentioned above...mommy cat
    mommy cat 1,654 Replies Flag this Response
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