Discussions By Condition: I cannot get a diagnosis.

HELPLESS, gumline problems, dry mouth, dry eyes.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • September 29, 2008
  • 04:55 PM

Hi, All

For the last three years I have been trying to find a Doctor that could give me a diagnosis.

Male:age 37, 100% Heterosexual.

Symptoms: Dry Mouth, Dry Eyes, dry lips, Dry Sinus,Hands extremely dry. Doctor(ENT) believe the dry mouth maybe complicating the symptoms such erthoumoutous candidisis in mouth edge of the innner lips and center of tongue...dry cough, hoarness. This started when I got sick over 3 years ago rash sometimes on legs and trunk(was given cortisone shots for it),101-99 fever, upset stomach, .. for about month., got better then about 2 months later begin to have dry mouth, begin to have nerve pain in arms and sometime legs...rest of symptoms followed as mention above.

Medication currently taking: after 3 years,started diflucan(for mouth) almost every 100 mg day, nystan mouthwash when need immediate control of sore in mouth, Dapsone for what could be Lichen planus, Lyrica:for arm pain especially at the elbow(still have dryness with or without Lyrica)

history:I am heterosexual....I have been all my life...but I have been married ever since I was in high school, I got divorced age 34,begin dating (and had relations with some people) settle down met someone after I got sick..I immediately thought I had messed myself up by with say HIV...I told her what was going on but we still stayed together....didn't have sex for a year...all this time I had 3 or 4 cortisone shots through out the year for rashes...so at the 6 month(after got well) mark went to an infectious disease doctor and 2 years to be on the safe side...he ran HIV RNA, DNA,anitbody test T cell counts, liver, urniuan test, Chlamydia, only thing he didn't run was herpes which I have never had any signs of it. ....everything was normal. Went to a Gastro Doc for some had reflux..he checked for Celitis with a scope...Immunologist(allergy) doctor said I do have allergies..so begin allegry shots, Then I thought rhmeumatologist would have some answers they ran a schemer test on my eyes that came back a 7 which is 15 or higher is normal...Ophthalmologist has put plugs in my tear ducts so I would have more moisture...started LYRICA for nerve pain treatment....they ran ANA, SSA, SSB, and some other antibodies test....everything normal ..ENT does sees I have dry mouth and sinus which he call sicca(doesn't know why) Dermatologist sees my lips are sometimes inflamed..several biopsiy have been done on lip and two on gum..come back such hyperkartisis..another said antinic keratisis(Doc said that can be normal for most people) most have come back as non specific..saying that...the time the biopsy have been done where at the doctors time frame and not when its been inflamed but when its healing....Dermatologist is prescribing the diflucan,or nystatin and dapsone which all seem to help...Dermatologist thinks this sound just like Sjögren's...but I am a male....9 out 10 are women who get it..and all blood work for Sjogrens have been back normal.(ana, ssa, ssb)....Rheumatologist has tryed to get me into the mayo clinic but because of the bloodwork and they will not see me....which is strange..

My thoughts: I believe this to be something autoimmune(possible dermatological) related though all blood work is normal...after 2 years I don't believe it to be anything infectious(viral) or something that would put my wife at danger.....this is not killing me but it is putting a major damper on my life not to mention my marriage.I don't believe it to be Lichen planus...because the biopsys (though I wouldn't rule it out)...I am starting to think that the root of the problem is the dryness which is causing secondary problem Candidsis and sores in mouth..despite the statics are against me I believe along with a another doctor that this could a form of sjogren's that is not fully developed....I am just about worn out....

PLEASE....IF ANYBODY can give some good advice I on what to do or who to see or what test to recommend I would appreciate it...I WANT MY LIFE BACK PLEASE....rheumatologist is going to see if Baylor would take this on...but if mayo doesn't want it....then I am not sure why baylor would......I can't enjoy my food, smell has been effected, I can't make love to my wife like we would like too...this is very frustrating and painful at times.

Thank you to anyone who reads this...

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3 Replies:

  • It does sound like Sjogrens to me, too...why didn't you get a herpes 2 blood test? You said something about rashes and lip sores. You could try 2 tests, herpes 1 and herpes 2; there's a combo one, but it is not specific; I have seen a rare herpes 1 case that gave very strange symptoms but the lady received the virus from a bite so instead of going to her ganglion, it was spread throughout her body...check this out: http://www.wrongdiagnosis.com/d/dry_mouth/causes.htmSyphilisPrimarysyphilis typically produces a solitary painless, red ulcer (chancre) on the lip, tongue, palate, tonsil, or gingivae. The ulcer appears as a crater with undulated, raised edges and a shiny center; lip chancres may develop a crust. Similar lesions may appear on the fingers, breasts, or genitals, and regional lymph nodes may become enlarged and tender. During the secondarystage, multiple painless ulcers covered by a grayish white plaque may erupt on the tongue, gingivae, or buccal mucosa. A macular, papular, pustular, or nodular rash appears, usually on the arms, trunk, palms, soles, face, and scalp; genital lesions usually subside. Other findings include generalized lymphadenopathy, a headache, malaise, anorexia, weight loss, nausea, vomiting, a sore throat, a low-grade fever, metrorrhagia, and postcoital bleeding. At the tertiarystage, lesions (usually gummas — chronic, painless, superficial nodules or deep granulomatous lesions) develop on the skin and mucous membranes, especially the tongue and palate.
    Monsterlove 2,921 Replies
    • September 30, 2008
    • 00:57 AM
    • 0
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  • Wow...that's scary, I know, have been checked out for syphilis with infectous disease doc(all negative) and as far blood work for herpes 1 or 2 I haven't had any signs of blister(or group of blister so I guess that's why i haven't had any blood work for that) my dermatologist did do several lip biopsy and he did do "viral test" on it , I guess that means herpes and it came back normal or negative.
    Anonymous 42,789 Replies
    • September 30, 2008
    • 03:13 AM
    • 0
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  • It's sjogren's, but NEITHER the blood tests nor the lip biopsies are 100% sensitive. So it's sjogren's that is just not panning out on the blood tests or biopsies, at least not yet. They had changed the criteria before, they will probably change it again...
    Anonymous 42,789 Replies
    • February 23, 2010
    • 04:41 AM
    • 0
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