Discussions By Condition: I cannot get a diagnosis.

So confused and frustrated. Undiagnosed ear/jaw/mouth problem

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: BenBen
  • February 25, 2009
  • 08:09 AM

I feel like a medical mystery show on TLC...... I hope there's enough room here for me to post this crazy story. Thanks if anyone actually gets through it. I am a 33 year old white male 6' 6" 250LB (Normal range is 200LBS). I'm currently seeing specialists, and they are all in the "I have to run some tests." stage. Most doctors I see seem overwhelmed by the number and broad spectrum of my symptoms. However, the symptoms can all be tied together by the fact that they all flare up and subside at the same times.
I'll start where the symptoms started......After having a broken tooth in the front (1998) which reinfected many times, and a terrible months long battle with impacted and infected wisdom teeth, (I'll spare that story!) I began having problems with bleeding from my mouth. At this time I still had the half front tooth in my mouth (no insurance). The tooth reinfected several times before I finally had it pulled (2002). During the time it was getting reinfected, I was noticing other strange symptoms such as a slight buzzing in my left ear, aching in my left jaw and underneath the jaw where the gland would swell, slight distortion of the vision in my left eye, dizziness, diarrhea in the mornings, bouts of dizziness (especially while standing or sitting, nighttime and waking the worse), and random mouthfuls of blood. Also accompanying these symptoms comes strange other intermittent symptoms like a sore spot in the throat that may last a few hours to a few days, sore spots on the gums that only last until some blood comes out, then the soreness goes away, shooting pains in my left jaw, and headaches that come and go feelings of poor circulation and oxygen starvation, shallowness of breath, loss of energy, and general overall decline in health have gotten more and more prevalent over the past several years since the beginning of these symptoms. All of the symptoms seem to be much worse first thing in the morning, or while tired, or lying down. Since this started, there have been many times where I was on antibiotics for varying reasons for whatever the dental or medical reasons were at the time. Antibiotics used to all but eliminate these symptoms almost immediately, all of them. However, after every course of antibiotics, the symptoms would slowly but surely return to full force, then begin to incrementally worsen. I was without insurance for quite some time, and treating something that no one could pinpoint was quite impossible. Incidentally, the reoccurring symptoms got worse. The blurred vision is even blurrier when it flares up, the buzz in my left ear has become total ringing in both ears, the area in my neck and under my jaw on the left side feel tight and under pressure behind my left eye, my eustation tubes are closed, but my ENT sees no reason why, the intermittent mouthfuls of blood were very bad for a few years, then petered off to where I only get smaller amounts of blood, and less often, but all the other symptoms persist. Now, my left gland under the jaw doesn't swell anymore it just stays a hard little knot that hurts. Also, antibiotics do nothing at all anymore. My ENT is treating me currently for "Signs of chronic infection.". As soon as I started the Antibiotic treatment, the symptoms seemed to get WORSE! I have kept up the treatment though because I am not a doctor. I have experienced a change in my whole chemistry over these years and have had many other smaller issues that come from general bad health such as terrible breath in the mornings and after oral bleeding, shortness of breath, jock itch, athletes foot, weight gain due to lack of exercise....etc. I have never been prone to any of these things until I started with this crazy trip. I smoked cigarettes for 18 years quit one month ago. I have been feeling marginally better because of that, but have seen no reduction in these symptoms. Sometimes the ringing in my ears can be maddening. I am getting extremely frustrated by watching my doctors scratch their heads. My ENT tried to tell me that all these symtoms could be unassociated, and just from different random causes. However, seeing as they all come and go at exactly the same times, get better or worse at all the same time, and all seem to have started and gotten worse together these symptoms must point to a commonality in my logic. But I'm no doctor....*sigh* I've actually been to the emergency room because of this issue because it's pretty scary sometimes. I've experienced dizziness that almost caused fainting, bad headaches and bleeding from the mouth, shortness of breath, etc., gone to the emergency room, and have been told everything from "Sinus/middle ear infection.", to "TMJ", to "It's the marijuana.", or "there's nothing wrong with you." I've even been referred to a psychiatrist! Maybe they thought the blood was coming from my brain? Haha I don't know. All I do know is that I am very scared and have been suffering with and frustrated over this for almost ten years now. I have another appointment with my ENT who thinks the symptoms could be unrelated tomorrow. I'll update this if he has anything important to add. Just for the record, I've had chest/head/dental x-rays, head/sinus/soft tissue neck CT scans and all blood work done recently. Still a lot of head scratching...... I’m still freaked out about it, and have had crazy “I’m dying” thoughts for years because I know darn well I’m not making this crap up, because there’s proof of the symptoms, but no evidence of the cause……. It feels a lot like infection, I’ve been told that blood tests show no infection, but I swear I taste it sometimes when I spit blood. Infection in the face for a long time just can’t be a good thing……..I don't know.....I'm very scared and frustrated. This affects my energy, general health, and sense of wellbeing. Please, if anyone has any hope for a resolution or diagnosis, I'd owe you my happiness!

Reply Flag this Discussion

14 Replies:

  • Ummm, thanks Blaze....errr First of all, I use my cell phone on my right side......Also.....I didn't start using a cell phone til 2007, and I'm not much for talking on it. Anyways......uh, thanks.
    BenBen 5 Replies
    • February 26, 2009
    • 05:52 AM
    • 0
    Flag this Response
  • I am really sorry for what you’re going through. Of course it’s not “all in your head”! Well, in a way it is, but not the way they think… ;) Your story is a cautionary tale on how important it is to avoid long-standing infections. I believe that they can unsettle the whole immunological response. I don’t think I can help much but I am curious, have you been able to figure out where in your mouth the blood comes from? Is it from the gingiva around a certain tooth? Do you have any bleeding while brushing your teeth?
    Felsen 510 Replies
    • February 26, 2009
    • 11:45 PM
    • 0
    Flag this Response
  • I totally agree with bLaze because I have lyme too and i have a lot of problems in the mouth. My major symptoms at the beginning was ''a feeling to take two teeths out'' They bottered me, like if something was in it, this is what i said...Then, it passed....Years and multiple disgnosis later, that feeling came back and I did have an infection in my mouth. This is right when I started to be sooo sick, looking for an answer and finally got a lyme physicians to diagnose me with chronic lyme. I am getting better, and now, I understand that these teeths symptoms where a lyme symptoms. Spirochites of lyme goes in the mouth...sorry for the image...:eek: Herxeimer reaction is an increse of symptoms when you start the antibiotics because tha make the toxins of these''things''come out. That calm down after a moment. Seek a lyme literate doctor. They use the good tests, know howto disgnose and treat. Go on lymenet.
    Fannou 111 Replies
    • February 27, 2009
    • 09:16 PM
    • 0
    Flag this Response
  • I am really sorry for what you’re going through. Of course it’s not “all in your head”! Well, in a way it is, but not the way they think… ;) Your story is a cautionary tale on how important it is to avoid long-standing infections. I believe that they can unsettle the whole immunological response. I don’t think I can help much but I am curious, have you been able to figure out where in your mouth the blood comes from? Is it from the gingiva around a certain tooth? Do you have any bleeding while brushing your teeth? It seems like the blood does come from the place where the broken tooth was extracted, and sometimes it seems to come from the corner of my jaw where the wisdom tooth was impacted/infected/removed. Sometimes, it's just hard to tell where it came from. No, it doesn't bleed when I brush my teeth. Well, I should say rarely, but when it does it's just a teeny bit.My ENT had me on antibiotics for almost a month now, and I just stopped them a couple days ago. I was starting to get rashes, indigestion and diarheah. I figured if it doesn't feel better after four weeks on antibiotics, then there's not much sense in continuing with them. My ears are still ringing, I pointed out to him that I still have a hard knot under my jaw that is often sore. He kinda brushed it off and said it's a spit gland. He also said that for the clogged eustation tubes he suggests I "Pop my ears", and for the ringing in my ears he says, "Turn on a cieling fan or something when you sleep for the noise." I still get bad head rushes when I stand up, too. I can hear what sounds like short burtst of wind every time my heart beats, and my head pounds along to the beat untill I half-stand and breathe deeply for a minute. I keep telling myself that I'm out of shape, but it just happens too often to be normal. I guess it's time for a ninth opinion. This ENT seems to think that whatever I'm experiencing is superficial, and allergy related. He said that the second CT scan doesn't show much improvement after all the antibiotics, but still seems to think it's no big deal. For some reason, I feel that infection not going away IS a big deal! I guess I need to see an infection specialist? Is there such a thing? Okay, search engine here I come.......*sigh*
    BenBen 5 Replies Flag this Response
  • Fannou, very interesting.....I'll check it out....thanks.
    BenBen 5 Replies Flag this Response
  • Umm, I think I messed something up in this forum. Oops, I may have posted my reply to the wrong place. I don't know what happened. Anyways, no it doesn't bleed when I brush my teeth. If it does on a very rare occasion, it's just a little teeny bit. I think that should be fairly normal.... And yes, it seems like the blood comes from my jaw sometimes, and the front tooth site where I had the broken one extracted. Other times, it just seems to come from nowhere at all.....Also, thanks Felsen. It is pretty frustrating and scary. Thanks for acknowledging that.
    BenBen 5 Replies Flag this Response
  • Benben, the blood must come from somewhere. It must be from either dental gingival or gingiva in your mouth, if you are having any sores. The feelings of poor circulation and oxygen starvation, shallowness of breath, might be a result of stress. Look at Harmonium’s wise reply to Tootsie,http://forums.wrongdiagnosis.com/showthread.php?t=38289&page=3 I also wanted to say that even if they wouldn’t find the cause to all this, it might all quiet down by itself, since you are a young person. I think it’s wise of you to quit smoking because it’s a strain on your immune system. I am glad to see that you havn’t lost your sense of humour (“blood from the brain?”). I am really keeping my fingers crossed for you. I hope you soon feel better! :)
    Felsen 510 Replies Flag this Response
  • It seems like the blood does come from the place where the broken tooth was extracted, and sometimes it seems to come from the corner of my jaw where the wisdom tooth was impacted/infected/removed. Sometimes, it's just hard to tell where it came from. No, it doesn't bleed when I brush my teeth. Well, I should say rarely, but when it does it's just a teeny bit.My ENT had me on antibiotics for almost a month now, and I just stopped them a couple days ago. I was starting to get rashes, indigestion and diarheah. I figured if it doesn't feel better after four weeks on antibiotics, then there's not much sense in continuing with them. My ears are still ringing, I pointed out to him that I still have a hard knot under my jaw that is often sore. He kinda brushed it off and said it's a spit gland. He also said that for the clogged eustation tubes he suggests I "Pop my ears", and for the ringing in my ears he says, "Turn on a cieling fan or something when you sleep for the noise." I still get bad head rushes when I stand up, too. I can hear what sounds like short burtst of wind every time my heart beats, and my head pounds along to the beat untill I half-stand and breathe deeply for a minute. I keep telling myself that I'm out of shape, but it just happens too often to be normal. I guess it's time for a ninth opinion. This ENT seems to think that whatever I'm experiencing is superficial, and allergy related. He said that the second CT scan doesn't show much improvement after all the antibiotics, but still seems to think it's no big deal. For some reason, I feel that infection not going away IS a big deal! I guess I need to see an infection specialist? Is there such a thing? Okay, search engine here I come.......*sigh* Your old post has now showed up. It seems very unlikely that the blood comes from the place where the broken tooth was extracted or from where the wisdom tooth was impacted/infected/removed, since these events happened more than 5 years ago. The gingiva usually heals quickly after a tooth extraction. If there would be a residual infection, it would show on x-ray pictures. But it must come from somewhere. It’s not “from your brain”. Lol. :D Also, if they put you on another antibiotic, you must take probiotics daily to prevent stomach problems. Another thing, a salivary gland is never a hard knot, unless there is a stone in it. I think the hard knot is a lymph node. And yes there are infection specialists. I do agree that you are in a mess. I do wish, I could help more. Good luck, Benben! :)
    Felsen 510 Replies Flag this Response
  • Thank you, Felsen. Right at this moment, I'm pausing my doctor appointment spree. I'm still trying to decide who to see next.....I'll post when I figure out what I'm doing. Thanks a million! :)
    BenBen 5 Replies Flag this Response
  • Dear Frustrated writer:I hope I'm not too late to help you. After reading your post last night; I stayed up until 6:15am researching all your symptoms in medical books, and was determined to find some answers for you.First I must say, you need to seek medical attention as soon as a health issue arises, otherwise one issue can culminate into many; resulting in life or death matters.With out explaining all the medical terminology and rippling cause and effect of every symptom and diagnose that derived to my conclusion; I will instead give you the conclusion. Due to poor oral hygiene, chronic untreated infection, possily vitamin d, c, and niacin deficiency; all cuppled with chronic smoking during this time, you "may" have ORBITAL CELLULITIS; which has spread into your inner ear, causing OTITS MEDIA.UNTREATED: the dangers are blindness, spinal cord infection/damage, blood clots in brain, and brain infection/Megnigitis.Not having yourself diagnosed and treated is extremely life threatening and can lead to death!Am I trying to scare you? NO. These are the facts. Even though you lack insurance and money, your health and wellness is no less important than the person that has.Don't give up, BE PERSISTANT, return to your local hospital, and let them know you want to be tested for menigtis, O.C. and O.M. Take "yes " as the ONLY answer. When you are pushed away, do not leave, request another physician; if none is provided for you, visit the Hospital Director!Get help, your are very ill, as I hope this gets to you and I'm not too late. I'm saddened and sorry that you have had so much struggle. Be strong and realize we are all people, cloaked in gloves called a body form. No one individual is more or less important in this life than the other, rather we all need each other for survival.Please update me, copiouspath@gmail.comgood luck
    Anonymous 42789 Replies
    • December 19, 2009
    • 06:45 PM
    • 0
    Flag this Response
  • I feel like a medical mystery show on TLC...... I hope there's enough room here for me to post this crazy story. Thanks if anyone actually gets through it. I am a 33 year old white male 6' 6" 250LB (Normal range is 200LBS). I'm currently seeing specialists, and they are all in the "I have to run some tests." stage. Most doctors I see seem overwhelmed by the number and broad spectrum of my symptoms. However, the symptoms can all be tied together by the fact that they all flare up and subside at the same times.I'll start where the symptoms started......After having a broken tooth in the front (1998) which reinfected many times, and a terrible months long battle with impacted and infected wisdom teeth, (I'll spare that story!) I began having problems with bleeding from my mouth. At this time I still had the half front tooth in my mouth (no insurance). The tooth reinfected several times before I finally had it pulled (2002). During the time it was getting reinfected, I was noticing other strange symptoms such as a slight buzzing in my left ear, aching in my left jaw and underneath the jaw where the gland would swell, slight distortion of the vision in my left eye, dizziness, diarrhea in the mornings, bouts of dizziness (especially while standing or sitting, nighttime and waking the worse), and random mouthfuls of blood. Also accompanying these symptoms comes strange other intermittent symptoms like a sore spot in the throat that may last a few hours to a few days, sore spots on the gums that only last until some blood comes out, then the soreness goes away, shooting pains in my left jaw, and headaches that come and go feelings of poor circulation and oxygen starvation, shallowness of breath, loss of energy, and general overall decline in health have gotten more and more prevalent over the past several years since the beginning of these symptoms. All of the symptoms seem to be much worse first thing in the morning, or while tired, or lying down. Since this started, there have been many times where I was on antibiotics for varying reasons for whatever the dental or medical reasons were at the time. Antibiotics used to all but eliminate these symptoms almost immediately, all of them. However, after every course of antibiotics, the symptoms would slowly but surely return to full force, then begin to incrementally worsen. I was without insurance for quite some time, and treating something that no one could pinpoint was quite impossible. Incidentally, the reoccurring symptoms got worse. The blurred vision is even blurrier when it flares up, the buzz in my left ear has become total ringing in both ears, the area in my neck and under my jaw on the left side feel tight and under pressure behind my left eye, my eustation tubes are closed, but my ENT sees no reason why, the intermittent mouthfuls of blood were very bad for a few years, then petered off to where I only get smaller amounts of blood, and less often, but all the other symptoms persist. Now, my left gland under the jaw doesn't swell anymore it just stays a hard little knot that hurts. Also, antibiotics do nothing at all anymore. My ENT is treating me currently for "Signs of chronic infection.". As soon as I started the Antibiotic treatment, the symptoms seemed to get WORSE! I have kept up the treatment though because I am not a doctor. I have experienced a change in my whole chemistry over these years and have had many other smaller issues that come from general bad health such as terrible breath in the mornings and after oral bleeding, shortness of breath, jock itch, athletes foot, weight gain due to lack of exercise....etc. I have never been prone to any of these things until I started with this crazy trip. I smoked cigarettes for 18 years quit one month ago. I have been feeling marginally better because of that, but have seen no reduction in these symptoms. Sometimes the ringing in my ears can be maddening. I am getting extremely frustrated by watching my doctors scratch their heads. My ENT tried to tell me that all these symtoms could be unassociated, and just from different random causes. However, seeing as they all come and go at exactly the same times, get better or worse at all the same time, and all seem to have started and gotten worse together these symptoms must point to a commonality in my logic. But I'm no doctor....*sigh* I've actually been to the emergency room because of this issue because it's pretty scary sometimes. I've experienced dizziness that almost caused fainting, bad headaches and bleeding from the mouth, shortness of breath, etc., gone to the emergency room, and have been told everything from "Sinus/middle ear infection.", to "TMJ", to "It's the marijuana.", or "there's nothing wrong with you." I've even been referred to a psychiatrist! Maybe they thought the blood was coming from my brain? Haha I don't know. All I do know is that I am very scared and have been suffering with and frustrated over this for almost ten years now. I have another appointment with my ENT who thinks the symptoms could be unrelated tomorrow. I'll update this if he has anything important to add. Just for the record, I've had chest/head/dental x-rays, head/sinus/soft tissue neck CT scans and all blood work done recently. Still a lot of head scratching...... I’m still freaked out about it, and have had crazy “I’m dying” thoughts for years because I know darn well I’m not making this crap up, because there’s proof of the symptoms, but no evidence of the cause……. It feels a lot like infection, I’ve been told that blood tests show no infection, but I swear I taste it sometimes when I spit blood. Infection in the face for a long time just can’t be a good thing……..I don't know.....I'm very scared and frustrated. This affects my energy, general health, and sense of wellbeing. Please, if anyone has any hope for a resolution or diagnosis, I'd owe you my happiness!My son is having alot of problems with his jaw as in it feels like it is dislocated. We have been to the er for the past three sundays in a row. At first they thought is was a dislocation problem...now they say it may be muscle spasms.....the reason Im here is I noticed they said it was the marijuana??? this problem usally occurs an hour or so after he smokes pot. Can anyone shed some light on this??? Thank-You
    Anonymous 42789 Replies
    • January 11, 2010
    • 02:05 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Thank you, Felsen. Right at this moment, I'm pausing my doctor appointment spree. I'm still trying to decide who to see next.....I'll post when I figure out what I'm doing. Thanks a million! :)One year of ear oddity- wet, itchy, lack of wax, smells like yeast, then...perforated eardrum despite doctor care, nasty fungus, surgery, ear healed great. Now, for about six months...dizzy, extreme fatigue, loss of taste and weird and worst...smelled feces often which now is replaced by the lovely odor of car/diesel fumes and a horribly painful jaw. Yet another round of tests...third set of x-rays...this time ct scan of bones, eeg of brain, all normal so far, more blood tests, all normal so far, and an appointment in three weeks to get possibly tmj help. Gee...three more weeks pain, ache....I WANT to feel good and be healthy, but test, test, test, all normal and still....these awful symptoms persist. I can relate to your frustration. Hang in there. If the tests show nothing for me, I was told to check out UCLA and the HOUSE ENT school. I don't know. Just so weary of tests, fees and no answers.Hang in there. I sometimes feel like I am a nut, but I know I can't create these symptoms.Maybe medicine is just too limited.
    Anonymous 42789 Replies Flag this Response
  • Check your home for mold! An extreme water seepage problem, that led to a massive mold infestation, just drove my family and I from our home of 5 years! I started having symptoms following a broken eye tooth that include: sore throat, lump in throat (near right ear jaw area), pain when swallowing (as if swallowing shards of glass), sinus drainage, itching in right ear, ears feel full, red swollen right tonsil, ears burning, burning of entire mouth, fatigue, muscle aches, brain fog and confusion, bouts of diareah then constipation, etc. Through out months of symptoms I have never ran a fever, which leads most dr's to insist there's no infection, even though my cbc indicated elevated wbc ie. Infection! Also had two teeth abscess with no pain! This isn't a complete list of symptoms but they cover the majority! Google mold poisoning or toxcicity! ( Not mold allergy) you will find it interesting I'm sure! Good luck
    Anonymous 42789 Replies Flag this Response
  • I wonder what the original writer, Ben Ben, has discovered about a diagnosis for his condition. Is it possible that after all the courses of antibiotics that Candida could be doing some of this damage?
    Anonymous 42789 Replies
    • December 30, 2010
    • 01:18 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.