Discussions By Condition: I cannot get a diagnosis.

Face/Neck/Chest pain for over 3 yrs after dental procedure

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Jean Marie
  • April 19, 2007
  • 04:17 AM

My symptoms are - left side of tongue and soft tissue around it is sore and feels swollen. I can feel tenderness under my jaw, and the inflammation seems to follow a path down my neck to a particular spot deep inside by my breastbone. If I irritate the spot on my chest, it causes me to cough and gag. This is all very painful and is ruining my life. I've lost track of the number of doctors I've been to (not all included below) - can find no help. I've been trying to do some research on my own, and am wondering if I could have a deep neck infection. My current doctor says no, because it does not show in bloodtests, I am not running a fever, and I would be much sicker if that were the case. (I'm wondering just how sick I have to be?!) My reasearch indicates that these types of infections don't always show in blood tests, but I've found doctors are hard to argue with. Anyway, below is a list of events. Any suggestions or advice would be appreciated. Sorry so long.

Nov 2003 – Left wisdom tooth pulled (no antibiotics), dry socket developed, packed several times

Dec 2003 – Diagnosed with severe upper respiratory viral infection (no blood test taken)

Jan 2004 – Diagnosed with sinusitis lasting 6 months & treated off and on with different antibiotics, antihistamines, etc. .During treatment began noticing tingling and pain in my tongue, severe jaw pain, and slight discomfort down my breastbone (all on left side only). Sinus CT – normal.

July 2004 – Clinically diagnosed with jaw infection which had spread to the gland and was squeezing nerves causing me discomfort (jaw, gland, down the side of my neck, chest, etc.) and given antibiotics. Blood tests were normal, but doctor said this was not uncommon when an infection localizes. Chest x-ray – normal.

Aug 2004 – No improvement. Referred to oral pathologist. Full panoramic x-ray done - normal. A-typical neuralgia diagnosed. (WRONG DIAGNOSIS – see below)

Sept 2004 – Problems persist. ENT finds inflammation on my tongue and removes it. Biopsy shows inflammation only. (Had inflammation removed 3 times – biopsies normal except showed inflammation). Throat CT done – normal. Throat scope – normal. Allergy tested – a few low level allergies.

Aug 2005 – All problems still ongoing – left side only. Another chest x-ray as well as a pulmonary function test performed. Asthma diagnosed. I try & tell doctors that lung constriction is on left side ONLY. Asthma meds ineffective. Placed on prednisone.

June 2006 – Referred to pulmonologist who seemed to disagree with asthma diagnosis. Chest CT scan done – normal. He tells me I should see an oral surgeon (could not get into for 6 months).

July 2006 - Although no indication by x-ray, dentist decides to drill into tooth (next to original dry socket) because she notices sensitivity to cold. After 2 ½ years, abscess tooth finally FOUND! Jaw pain immediately relieved. Coughing is much better. I am put on antibiotics & a week later the tooth is removed per my request. Four days later, swelling develops along jaw bone with terrible pressure like chest pain (left side). A few weeks later, I feel a “bursting” sensation at a very precise point along my breastbone. One left rib is extremely sore and I feel a burning sensation down my left chest cavity.

Aug 2006 – I see an oral surgeon.. After examination and consultation he says he is leaning toward a diagnosis of infection and talks about sending me to an infectious disease specialist. He wants to consult with an ENT first. I was never able to reschedule with him (long story). I was on oral antibiotics for about 4 weeks after the abscessed tooth was pulled. However, I was also on Prednisone (once again) which I was told could have been affecting the effectiveness of the antibiotics. Swelling eventually went away after several weeks.

Sept 2006 – Began seeing an Internal Medicine specialist. Full stress testing, blood testing, electrocardiogram, upper GI, and nuclear jaw scan performed. All tests came back normal except jaw scan showed “hot spots”. Jaw pain continues to improve, but soft tissue, neck (lymph gland area), and breastbone still extremely painful – I still cough if I sit or lay in a way that agitates my chest. She refuses to believe it could be infection.

Jan 2007 – I revisit oral pathologist who once again diagnoses neuralgia and some inflammation. However, he cannot explain why I become hoarse when the soft tissue on my gum becomes even more irritated (seemingly by have my tongue rub against it when I try talking)…says “I must just be tired”. He tells me to stop using tartar control toothpaste. Says breastbone pain not connected.

Feb 2007 – Internal Medicine doctor sends me to pain clinic for cortisol injections into my rib joints. (Possible diagnosis – Costochondritis?) Condition does not improve.

HELP!

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16 Replies:

  • Jean Marie, as someone who is also having problem related to my jaw, I am particularly interested in your story. Let me first say you've been a real trooper to put up with all of this. If you don't mind I have a few questions:1. Did the area around your abscessed tooth swell up? As in the jaw bone. 2. Did you loose feeling in the abscessed tooth or was it still testing "active"? 3. Has the possibility of a bone tumor/bone cancer of your jaw been ruled out?To briefly sum up my situation, last November the bone around one of my mandibular molar teeth began to expand. It was a small little pea-sized lump and eventually got somewhat larger. There was also some expansion on the lingual side, however not symmetrical. I've had TONS of testing tone including dozens of x-rays, panoramic x-rays, 2 CT scans of the head and even a biopsy- all show nothing more than a slight bit of bone expansion and the biopsy found nothing cancerous. I've seen oral surgeons, dentists, and even endodontists as they suspected an abscessed tooth. I was told, just as you were, that a localized infection would not elevate inflammatory markers like CRP. I have no pain though, and when the tooth is tested for "activity" (meaning if the root is active) it is and I can feel the cold. The tooth with the small lump is a tooth that I've had filled for cavities on 5 different occasions, one of which I think the dentist said that they were shocked at how big the cavity was as it looked tiny on the x-ray. The most recent time the dentist said I just barely avoided needing a root canal. After going to a dental oncologist about this matter, he said that it was probably from grinding and clenching and it caused the bone to expand. It makes sense and the tests all support that (no visible tumors) but I am still wondering how accurate any of that was. Your situation is exactly why I am still concerned- the idea that you had a clear problem and yet NOTHING showed it. To get back to your issue, I think it might be conceivable that you suffered nerve damage from the tooth infection lasting so long. One test you might want to have, that you apparently didn't yet, is an MRI. Get one for both the head/neck and chest. It might show things that your various CT scans didn't because of the different technology used. If you are having bone pain, consider asking your doctor for a blood test looking at Alkaline Phosphate and your Calcium levels. This may rule out the possibility of any kind of bone cancer (though perhaps it's not even been considered) as it can cause bone pain. The tenderness under your jaw might be an inflamed lymph node- the MRI would be able to examine this in greater detail. The tongue issue- could this be damage from the biopsy? Has an oral surgeon or oral pathaologist/oncologist examined your tongue to check for any kind of growths? Are your papalle enlarged?
    Anonymous 42789 Replies Flag this Response
  • Mr. Concerned;39090]Jean Marie, as someone who is also having problem related to my jaw, I am particularly interested in your story. Let me first say you've been a real trooper to put up with all of this. If you don't mind I have a few questions: Thank you so much for the reply. Although I'm sorry you continue to have concerns regarding your own problem, it's nice to know I'm not alone when it comes to dealing with all these "issues". I'll answer your questions first - 1. Did the area around your abscessed tooth swell up? As in the jaw bone. 2. Did you loose feeling in the abscessed tooth or was it still testing "active"? 3. Has the possibility of a bone tumor/bone cancer of your jaw been ruled out?1. No, there was no indication AT ALL that the tooth was even abscessed - even after panogram and jaw MRI. The soft tissue along the entire length of my lower left jaw DID swell for several weeks after its removal. 2. No, I never lost the feeling in my abscessed tooth. In fact, sensitivity to cold is what made my dentist suspect there could be a problem. She drilled into it not knowing what she would find. I would have needed a root canal had she found nothing...we both took a real chance, but I was desperate. I am so glad she had the courage to do it. She found the tooth neucrotic with just very little of the nerves left alive. Thus all the terrible jaw pain I was having. 3. I've been to an oral pathologist twice and an oral surgeon once. Also, I've had a jaw MRI, CT, and nuclear scan done. The MRI was done at Mayo, as well as two of the biopsies, so I think jawbone cancer has been ruled out. I was at Mayo before the abscessed tooth was found and the chest pain became debilitating tho...so am thinking about going back. Your situation is exactly why I am still concerned- the idea that you had a clear problem and yet NOTHING showed it.Yes, it is terribly frustrating and you can't help but think the doctors are missing something "big". In my case, the pain and discomfort are so prominent that it interferes with my life....basically I don't have one. To get back to your issue, I think it might be conceivable that you suffered nerve damage from the tooth infection lasting so long. One test you might want to have, that you apparently didn't yet, is an MRI. Get one for both the head/neck and chest. It might show things that your various CT scans didn't because of the different technology used. If you are having bone pain, consider asking your doctor for a blood test looking at Alkaline Phosphate and your Calcium levels. This may rule out the possibility of any kind of bone cancer (though perhaps it's not even been considered) as it can cause bone pain. The tenderness under your jaw might be an inflamed lymph node- the MRI would be able to examine this in greater detail. I've had a jaw/head MRI, and I believe I've had every conceivable blood test known (but I'll check). I've read that to detect deep neck infections you need a special CT scan (w/contrast). I can't even get a doctor to do that, so I'm wondering about the neck/chest MRI...but worth looking into. Thanks. And yes, it is possible I have some nerve damage. But the thing that "plagues" me is that I can feel the inflammation path from my jaw, down my neck to my chest...and the coughing/gagging that results if I irritate it. An oral pathologist says that nerve damage wouldn't do this - or cause me to be hoarse (he said I'm probably just "tired" - ye gad!!) I got the distinct feeling he thinks I'm a hypochondriac. I know better.....I hadn't been sick in years before all this happened. I truly appreciate you taking the time to read & reply!
    Jean Marie 38 Replies Flag this Response
  • >nice to know I'm not alone when it comes to dealing with all these "issues". Yes; it's unfortunate but also somewhat comforting- to know that you're not crazy and that there are others with similar problems who also are lacking a diagnosis. I've been to so many doctors in the past few months and all of them basically think I'm a flat out hypocondriac but, physically speaking, perfectly healthy. >1. No, there was no indication AT ALL that the tooth was even abscessed - >even after panogram and jaw MRI. The soft tissue along the entire length of >my lower left jaw DID swell for several weeks after its removal.See, this is what fustrates me- you clearly had an abscessed tooth in the end, yet ALL of the tests performed said otherwise. Heck, you had above and BEYOND the normal range of testing for an abscessed tooth. It really makes you wonder- exactly what good are these things if they can't even find the problems they are created to find? As for the soft tissue swelling, that's normal. Any time there is trauma, swelling occurs. I had all 4 of my wisdom teeth pulled out simultaneously back in 2001 and wow, did my mouth swell up; even after the swelling I could hardly open my mouth properly because my jaw "locked" after a certain point. Even when I had the biopsy done back in February of this year, though it was just a small incision and some bone removed (albiet with a mallet and chisel) there was a large amount of swelling. >2. No, I never lost the feeling in my abscessed tooth. In fact, sensitivity to That's the other thing that bothers me- everything I was told about abscessed teeth indicated that in addition to pain, there is a complete lack of feeling in the tooth because the infection has destroyed the root. If you had feeling in the tooth, it's no wonder no one thought it was abscessed if that's what they go on (lack of feeling). >cold is what made my dentist suspect there could be a problem. She drilled Really? That I don't quite follow. I was told that if you could feel cold in the tooth, it means that the root is still alive. It's a bit confusing that your dentist would actually think that was a problem. But maybe I'm a bit confused here- do you mean normal sensitivity to cold (like when eating food) or do you mean it tested "active"? Densitst often spray this chemical onto a piece of gauze and press it against a tooth to see if the nerve is active- if the patient feels cold in the tooth then it's alive. >am so glad she had the courage to do it. She found the tooth neucrotic >with just very little of the nerves left alive. Thus all the terrible jaw pain I And NONE of the x-rays showed even the slightest bit of damage to either the tooth OR the root structure? That's just amazing, in terms of how such a huge problem can go totally undetected. I could see a case of a less experienced dentist missing a possible indication but you were at the Mayo clinic at one point apparently! >had a jaw MRI, CT, and nuclear scan done. The MRI was done at Mayo, as >well as two of the biopsies, so I think jawbone cancer has been ruled out. I Yes, that probably would rule it out...possibly. My CT scan shows only the most trivial of bone expansion in the areas I've mentioned and while everything looks normal (no change in the tooth structure or any other place of relevant convern, no obvious signs of tumors) nothing explains what's going on. >Yes, it is terribly frustrating and you can't help but think the doctors are >missing something "big". In my case, the pain and discomfort are so >prominent that it interferes with my life....basically I don't have one. Definately. I can't imagine having to deal with all that pain while being told it's not coming from anything. As mentioned, I don't have any pain but, in addition to the jaw issue, also have these hard, bony swellings slowly growing on the back of my skull. CT and x-ray show nothing indicating a tumor or "out of normal boundaries". Shortly after this started happening though, my body began to start "wasting" (thinning) yet my weight hasn't changed. Blood tests are normal, hormone tests are normal, etc. Doctors keep telling me that my body is just changing yet I find that impossible to believe. I'm quite convinced that, just like with your situation, there is something major going on here that is being missed. Just because I'm not presenting with a 2 foot tumor and horribly emaciated doesn't mean I don't have some form of early cancer that just so happens to defy traditional imaging and warning signs.>I've had a jaw/head MRI, and I believe I've had every conceivable blood Ok then, nevermind. I haven't had an MRI because my insurance company doesn't even feel it's necessairy. >test known (but I'll check). I've read that to detect deep neck infections Chances are that you've had both the tests I've mentioned as they are covered in basic blood and mineral counts. If nothing showed up as elevated then it's hopefully not a cause for concern.>you need a special CT scan (w/contrast). I can't even get a doctor to do >that, so I'm wondering about the neck/chest MRI...but worth looking into. Yeah, I've read that as well- certain types of scans are required to check for things. But of course if the normal scans look fine then good luck getting a doctor to order something more specific. >Thanks. And yes, it is possible I have some nerve damage. But the thing >that "plagues" me is that I can feel the inflammation path from my jaw, >down my neck to my chest...and the coughing/gagging that results if I Where on your jaw would you say it is? Below the tooth? Towards the bottom where it connects to the neck? For reference, which tooth was it that had the infection? Have doctors adequately examined your lymph nodes and ruled out any kind of systematic infection there? Have you had any muscle examinations (or even biopsies?) of the sensitive parts of the neck or chest? Where in the neck would you say it is? What about the chest- is it muscle? Bone? What kind of pain is it? Burning? Throbbing? Would you describe the pain as similar to what you're having in your jaw (meaning is it uniform) or is it a different type of pain in different places? Do specific movements cause it to hurt more?Has TM dysfunction been ruled out? >irritate it. An oral pathologist says that nerve damage wouldn't do this - or >cause me to be hoarse (he said I'm probably just "tired" - ye gad!!) I got Right. I've found in my own troubles that doctors keep telling you what they "know" yet it's amazing how many things you can find up via research of instances where their "typical presentation" expectation was totally off.
    Anonymous 42789 Replies Flag this Response
  • quote=Mr. Concerned;39216]>nice to know I'm not alone when it comes to dealing with all these "issues". Yes; it's unfortunate but also somewhat comforting- to know that you're not crazy and that there are others with similar problems who also are lacking a diagnosis. I've been to so many doctors in the past few months and all of them basically think I'm a flat out hypocondriac but, physically speaking, perfectly healthy. Been there - done that - STILL there! As for the soft tissue swelling, that's normal. Any time there is trauma, swelling occurs. I had all 4 of my wisdom teeth pulled out simultaneously back in 2001 and wow, did my mouth swell up; even after the swelling I could hardly open my mouth properly because my jaw "locked" after a certain point. Even when I had the biopsy done back in February of this year, though it was just a small incision and some bone removed (albiet with a mallet and chisel) there was a large amount of swelling. But did your swelling last over 6 weeks? >2. No, I never lost the feeling in my abscessed tooth. In fact, sensitivity to That's the other thing that bothers me- everything I was told about abscessed teeth indicated that in addition to pain, there is a complete lack of feeling in the tooth because the infection has destroyed the root. If you had feeling in the tooth, it's no wonder no one thought it was abscessed if that's what they go on (lack of feeling). I think the lack of feeling in the tooth would happen after the nerves had been destroyed. Nerves are what allow us to feel pain, right (that's why some people have trouble with tooth sensitivity)? I still had infection eating away at the little bit of live nerve that was left. Which is just one of the reasons I think I could have an ongoing infection from my very first removal. Could it have spread to the adjacent tooth? >cold is what made my dentist suspect there could be a problem. She drilled Really? That I don't quite follow. I was told that if you could feel cold in the tooth, it means that the root is still alive. It's a bit confusing that your dentist would actually think that was a problem. But maybe I'm a bit confused here- do you mean normal sensitivity to cold (like when eating food) or do you mean it tested "active"? Densitst often spray this chemical onto a piece of gauze and press it against a tooth to see if the nerve is active- if the patient feels cold in the tooth then it's alive. The nerve was still partially alive. I would flinch even when she shot air on it. And NONE of the x-rays showed even the slightest bit of damage to either the tooth OR the root structure? That's just amazing, in terms of how such a huge problem can go totally undetected. I could see a case of a less experienced dentist missing a possible indication but you were at the Mayo clinic at one point apparently! Yes, when I went back to the oral pathologist (not from Mayo) who had originally diagnosed neuralgia and told him of the abscess, he was very nonchalant and said "Well, these things just happen sometime". That after 2 1/2 years of pure agony!! grrrr Then he went on to say I am obsessed with my tongue! I was about ready to sock him at that point! There is NOTHING in my medical history to indicate I might be a hypochondriac. In fact, what it shows is that I never went to doctors (other than a yearly physical) until this nightmare happened. And then I was eventually proved RIGHT....there WAS something else going on. And there STILL IS something else going on. But hey, if doctors can't figure it out after 2 or 3 visits and a few tests...forget it. You don't even get referrals. I've had to find my own specialists. And yes, we are lucky to live within a day's drive of Mayo. Definately. I can't imagine having to deal with all that pain while being told it's not coming from anything. As mentioned, I don't have any pain but, in addition to the jaw issue, also have these hard, bony swellings slowly growing on the back of my skull. CT and x-ray show nothing indicating a tumor or "out of normal boundaries". Have you been to a bone specialist? Shortly after this started happening though, my body began to start "wasting" (thinning) yet my weight hasn't changed. Blood tests are normal, hormone tests are normal, etc. Doctors keep telling me that my body is just changing yet I find that impossible to believe. I'm quite convinced that, just like with your situation, there is something major going on here that is being missed. Just because I'm not presenting with a 2 foot tumor and horribly emaciated doesn't mean I don't have some form of early cancer that just so happens to defy traditional imaging and warning signs.Hmmmm if you are in your teens or twenties, I would say this COULD be normal. I see it happening in young people all the time where they seem to thin in bone structure. If your older, then yes....I might question it, too. >Thanks. And yes, it is possible I have some nerve damage. But the thing >that "plagues" me is that I can feel the inflammation path from my jaw, >down my neck to my chest...and the coughing/gagging that results if I Where on your jaw would you say it is? Below the tooth? Towards the bottom where it connects to the neck? For reference, which tooth was it that had the infection? Have doctors adequately examined your lymph nodes and ruled out any kind of systematic infection there? Have you had any muscle examinations (or even biopsies?) of the sensitive parts of the neck or chest? Where in the neck would you say it is? What about the chest- is it muscle? Bone? What kind of pain is it? Burning? Throbbing? Would you describe the pain as similar to what you're having in your jaw (meaning is it uniform) or is it a different type of pain in different places? Do specific movements cause it to hurt more?The pain is below where the 2 teeth used to be - in the lymph gland area, the left side of my tongue and on the floor underneath - it feels inflammed and swollen). My neck feels stiff if I bend it forward, and I can feel the path of the inflammation go deep inside to a particular spot either beside or in back of the left side of my breastbone. If I sit "crimped" or lay on my left side it becomes more irritated and I begin coughing - I can feel the irritation in my left lung. That breatbone pain is consistently sharp. And NO they have not completely ruled out infection, the doctors (except for 1) keep saying it's highly unlikely. That's what drives me crazy. I have described my symptoms consistently from the very beginning - before I began researching. So it is impossible that I am "inventing" them, or being "influenced", from things I've read. Yet I read on American Institute of Preventive Medicine website that a symptom of abscess is breastbone pain. From other research, I've discoverd that these infections like to "migrate" to the breastbone at times....that these infections are hard to diagnose, detect, etc., etc., - yet, the doctors just look at me like I'm crazy. THEY are driving me crazy....I just want them to rule infection out. I don't think that's asking too much. Has TM dysfunction been ruled out? No, this is also a possibility I need to research. On another health board, I found out there is a TMJ that has muscular involvement (rather than jaw joint) that can be caused by tooth removal...the tongue lacks the guidance needed and the muscles become strained and it's painful. However, finding a "good" TMJ doctor is hit & miss on a good day from what I understand. Sounds like another "clinical diagnosis" that could offer some relief if true....but also could be diagnosed & be completely off the mark. Right. I've found in my own troubles that doctors keep telling you what they "know" yet it's amazing how many things you can find up via research of instances where their "typical presentation" expectation was totally off.We have to hang in there, buddy! We know our body best. Good luck to you...and if you find anything out, be sure to post back.
    Jean Marie 38 Replies Flag this Response
  • Jean Marie, sorry I didn't notice you had posted a reply! The swelling on my jaw (and skull) has not gone away, but it was not in response to surgery. If the swelling from your procedure never went down, then it seems to me any normal doctor would already be clued into what was going on- an infection. >I think the lack of feeling in the tooth would happen after the nerves had >been destroyed. Nerves are what allow us to feel pain, right (that's why Correct. But it's amazing you could have had all that pain and trouble for years and no one bothered to figure it out. At the very least you'd think the nerve would have been dead. >originally diagnosed neuralgia and told him of the abscess, he was very >nonchalant and said "Well, these things just happen sometime". That I can't stand that type of smug attitude. Yeah, it just happens but when it's YOU then it's a different story. Easy for him to say- he hasn't been in your shores for the past few years. >there STILL IS something else going on. But hey, if doctors can't figure it >out after 2 or 3 visits and a few tests...forget it. You don't even get Tell me about it. ALL of the specialists I've seen now are basically telling me to forget about the issue. Even Memorial Sloan Kettering couldn't figure it out but was convinced it's not cancer. I have not been to a bone specialist actually, unless you consider the ENT doctors I've seen at MSK and NYU Cancer Center bone specialists. They are Head & Neck Oncologists and specialise in surgery there, but now that I think of it you're right- they are NOT bone specialists. >I would say this COULD be normal. I see it happening in young people all >the time where they seem to thin in bone structure. If your older, then >yes....I might question it, too.I am 25 actually, and this more or less began after having mononucleosis last November. I've heard, both from other users and even MSK, that the body begins to change during the 20's for some people but what I'm experiencing is quite profound. >irritation in my left lung. That breatbone pain is consistently sharp. And >NO they have not completely ruled out infection, the doctors (except for I seriously wonder if this is indeed a bone infection and that it's gone from your jaw down to your clavicle down to your ribs. I'd demand that doctors do everything possible to rule out infection. >diagnose, detect, etc., etc., - yet, the doctors just look at me like I'm >crazy. THEY are driving me crazy....I just want them to rule infection >out. I don't think that's asking too much.Tell me about it. Same story with me- I just went into the dentist with a small lump on my jaw. They told me it was nothing. As it slowly got larger and other dentists said it was nothing, then I began to start researching.
    Mr. Concerned 10 Replies Flag this Response
  • Mr. Concerned;40542]Jean Marie, sorry I didn't notice you had posted a reply! The swelling on my jaw (and skull) has not gone away, but it was not in response to surgery I don't quite understand. Do you have soft tissue swelling in your jaw & skull? Or is the bone actually enlarging?Correct. But it's amazing you could have had all that pain and trouble for years and no one bothered to figure it out. This REALLY upsets me. They make me feel like a hypochondriac & almost 3 years later, I am proved RIGHT - there WAS something else going on. And when I continue to complain about symptoms, they once again treat me like a hypochondriac when all my past history indicates otherwise. I have not been to a bone specialist actually, unless you consider the ENT doctors I've seen at MSK and NYU Cancer Center bone specialists. They are Head & Neck Oncologists and specialise in surgery there, but now that I think of it you're right- they are NOT bone specialists. Specialists are both a godsend & a nightmare. If you get to the "right" one with your problems, they can diagnose rare conditions other doctors cannot. However if go to the "wrong" one, they have very little expertise outside of their field so you end up spinning your wheels and getting nowhere. For instance, I have found that medical doctors have little or no knowledge of conditions caused by dental problems. The divide between the professions is huge. Have you tried and Internal Medicine doctor? I'm wondering if your having mono could indicate anything. Also, I can't remember if you said you've seen an Oral Surgeon? However, I'm wondering if an orthopedic doctor should be a consideration if your major concern is change in bone structure....at least they might be able to explain to you what is going on and give you some peace of mind. I seriously wonder if this is indeed a bone infection and that it's gone from your jaw down to your clavicle down to your ribs. I'd demand that doctors do everything possible to rule out infection. Yes, I need to do this. I've tried - but I think I must try harder. I just get so darn tired of trying to get doctors to help me. It used to be you just went to your family doctor & he/she would just keep researching & referring until some resolution was found. No more. YOU are your only advocate. I think that's why so many people post on these boards.I hope both of us find answers that make sense and let us live in the real world again. :-) Keep me updated.
    Jean Marie 38 Replies Flag this Response
  • Honey, you are not a hypochondriac...PLEASE go to www.ahummingbirdsguide.com seriously....look at L side of home page for symptoms link go there at the bottom of first paragraph is a link for a summary of symptoms increased susceptability to secondary infections(abcessed tooth ect...) see how many sx you have from the list...good luck.......I've been to Dr.s for the past 4 years and just recently found this info...it is viral, contagious and it seems to be of epidemic proportions, especially on this site...look around the site, hundreds of people with ME symptoms coincidence or not?????
    mommy cat 1654 Replies Flag this Response
  • Honey, you are not a hypochondriac....neither am I but I've been accused of it...PLEASE go to www.ahummingbirdsguide.com go to L side of home page, click symptoms page at the bottom of first paragraph is a link for a symptom summary list write down as many as you have....PLEASE take a look, I think it may help...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Honey, you are not a hypochondriac....neither am I but I've been accused of it...PLEASE go to www.ahummingbirdsguide.com go to L side of home page, click symptoms page at the bottom of first paragraph is a link for a symptom summary list write down as many as you have....PLEASE take a look, I think it may help...mommy catThank you, mommy cat, I will. One thing I am wondering. It sounds like ME is a rather controversial diagnosis - somewhat like bone cavitations or mercury poisoning (from fillings), which I've also considered. Have you been able to get a doctor to confirm your suspicions? Or at least consider them? I have a friend whose symptoms were a lot different than mine, but she was VERY sick for about 5 years. She hurt all over her, and was extremely weak - to the point she could barely walk. She had to quit her job, of course, and lost her health insurance. After years of searching, she turned to alternative medicine and was told she had mercury poisoning from all her fillings. She had her fillings replaced and "Bingo", within 4 months she was back to her old self. I'm really hoping that some day we'll all have our "Bingo" moment. I've decided to exhaust every traditional medicine avenue I can think of. Then, if that doesn't work, I'm going to my friend's alternative doctor in Canada. Please keep us informed about any progress you make in getting an ME diagnosis. Like I've mentioned, I do believe it's possible. But ME has SO many symptoms that anyone who is sick with anything could find symptoms there. Yes, I have some of the symptoms - but I also don't have most of them. :confused: Good luck to you!Jean
    Jean Marie 38 Replies Flag this Response
  • I'm not a doctor so take w/ a grain of salt-a cat acan is good for soft tissue dx (for your lymph node swelling) and you may want to look into cardiac coughing and/or reflux. (for your hoarseness):)
    lucy's mom 15 Replies Flag this Response
  • I'm not a doctor so take w/ a grain of salt-a cat acan is good for soft tissue dx (for your lymph node swelling) and you may want to look into cardiac coughing and/or reflux. (for your hoarseness):)Thank you for trying.....have had several CT scans (and MRI), full stress testing, and an Upper GI. Honestly - I believe it possible I still have an unresolved infection going on (maybe in the deep neck tissue...these are hard to diagnose)...that's why I am so interested in your appointment with the Perio - it's a specialist I haven't seen.
    Jean Marie 38 Replies Flag this Response
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  • Jean, I spent 6 hrs in ER Fri night having stroke-like sx..I have had several sx for several years...The ER dr not only listened to me, read the info I had in my purse, made copies of it, got online, looked at www.ahummingbirdsguide.com and put as a final diagnosis on my discharge summary Myalgic Encephalomyelitis symptoms. I had an appointment for June with a new dr. because I fired my last one the other day...He wouldn't listen. I called the new Dr. Mon am, told them the story and I'm going tomorrow at 10:15. They believe me as well....Jean, this is viral, contagious, Healthcare workers, teachers and students are more susceptible...Please just go to the symptoms page and list how many you have. I'm not saying this is what's wrong but I believe this to be of near epidemic proportions...I have recieved several e-mails from people saying they never heard of it, yet they have 2/3 of the sx...I had never heard of it either and I've been a nurse for 15 years (hence the healthcare worker part) Good luck and let me know how it goes...Peace and Be Well...mommy cat PS at the ER my Potassium was low and lymphocytes high..2 symptoms of ME...it's a place to start
    mommy cat 1654 Replies Flag this Response
  • Jean, I also wanted to tell you you don't have to have all the sx to have this...Have you heard of Fibromyalgia??? There are several people where I live diagnosed with it, rather recently...ME is Myalgic Encephalomyelitis...there are mild, moderate and severe cases of it...why couldn't Fibromyalgia be a mild case of ME??? Some women in my family have Fibromyalgia, yet I called them, asked them symptoms over phone and all of them had many more problems than just muscle and tendon pain...I'm not trying to shove this dx down anyone's throat but if you look around this site, there are hundreds of people with ME sx...I know ME has A LOT of sx but so have I for years and drs couldn't figure it out because most seemed so unrelated...All I'm saying is it's contagious keep that in mind...Yes it is a controversial topic with some doctors but if everything else has been ruled out...there are immune bloodwork test that can be done, simple bloodwork and PET, SPECT and MRI scans available...Good luck Jean and best wishes...Mommy cat
    mommy cat 1654 Replies Flag this Response
  • >nice to know I'm not alone when it comes to dealing with all these "issues". Yes; it's unfortunate but also somewhat comforting- to know that you're not crazy and that there are others with similar problems who also are lacking a diagnosis. I've been to so many doctors in the past few months and all of them basically think I'm a flat out hypocondriac but, physically speaking, perfectly healthy. >1. No, there was no indication AT ALL that the tooth was even abscessed - >even after panogram and jaw MRI. The soft tissue along the entire length of >my lower left jaw DID swell for several weeks after its removal.See, this is what fustrates me- you clearly had an abscessed tooth in the end, yet ALL of the tests performed said otherwise. Heck, you had above and BEYOND the normal range of testing for an abscessed tooth. It really makes you wonder- exactly what good are these things if they can't even find the problems they are created to find? As for the soft tissue swelling, that's normal. Any time there is trauma, swelling occurs. I had all 4 of my wisdom teeth pulled out simultaneously back in 2001 and wow, did my mouth swell up; even after the swelling I could hardly open my mouth properly because my jaw "locked" after a certain point. Even when I had the biopsy done back in February of this year, though it was just a small incision and some bone removed (albiet with a mallet and chisel) there was a large amount of swelling. >2. No, I never lost the feeling in my abscessed tooth. In fact, sensitivity to That's the other thing that bothers me- everything I was told about abscessed teeth indicated that in addition to pain, there is a complete lack of feeling in the tooth because the infection has destroyed the root. If you had feeling in the tooth, it's no wonder no one thought it was abscessed if that's what they go on (lack of feeling). >cold is what made my dentist suspect there could be a problem. She drilled Really? That I don't quite follow. I was told that if you could feel cold in the tooth, it means that the root is still alive. It's a bit confusing that your dentist would actually think that was a problem. But maybe I'm a bit confused here- do you mean normal sensitivity to cold (like when eating food) or do you mean it tested "active"? Densitst often spray this chemical onto a piece of gauze and press it against a tooth to see if the nerve is active- if the patient feels cold in the tooth then it's alive. >am so glad she had the courage to do it. She found the tooth neucrotic >with just very little of the nerves left alive. Thus all the terrible jaw pain I And NONE of the x-rays showed even the slightest bit of damage to either the tooth OR the root structure? That's just amazing, in terms of how such a huge problem can go totally undetected. I could see a case of a less experienced dentist missing a possible indication but you were at the Mayo clinic at one point apparently! >had a jaw MRI, CT, and nuclear scan done. The MRI was done at Mayo, as >well as two of the biopsies, so I think jawbone cancer has been ruled out. I Yes, that probably would rule it out...possibly. My CT scan shows only the most trivial of bone expansion in the areas I've mentioned and while everything looks normal (no change in the tooth structure or any other place of relevant convern, no obvious signs of tumors) nothing explains what's going on. >Yes, it is terribly frustrating and you can't help but think the doctors are >missing something "big". In my case, the pain and discomfort are so >prominent that it interferes with my life....basically I don't have one. Definately. I can't imagine having to deal with all that pain while being told it's not coming from anything. As mentioned, I don't have any pain but, in addition to the jaw issue, also have these hard, bony swellings slowly growing on the back of my skull. CT and x-ray show nothing indicating a tumor or "out of normal boundaries". Shortly after this started happening though, my body began to start "wasting" (thinning) yet my weight hasn't changed. Blood tests are normal, hormone tests are normal, etc. Doctors keep telling me that my body is just changing yet I find that impossible to believe. I'm quite convinced that, just like with your situation, there is something major going on here that is being missed. Just because I'm not presenting with a 2 foot tumor and horribly emaciated doesn't mean I don't have some form of early cancer that just so happens to defy traditional imaging and warning signs.>I've had a jaw/head MRI, and I believe I've had every conceivable blood Ok then, nevermind. I haven't had an MRI because my insurance company doesn't even feel it's necessairy. >test known (but I'll check). I've read that to detect deep neck infections Chances are that you've had both the tests I've mentioned as they are covered in basic blood and mineral counts. If nothing showed up as elevated then it's hopefully not a cause for concern.>you need a special CT scan (w/contrast). I can't even get a doctor to do >that, so I'm wondering about the neck/chest MRI...but worth looking into. Yeah, I've read that as well- certain types of scans are required to check for things. But of course if the normal scans look fine then good luck getting a doctor to order something more specific. >Thanks. And yes, it is possible I have some nerve damage. But the thing >that "plagues" me is that I can feel the inflammation path from my jaw, >down my neck to my chest...and the coughing/gagging that results if I Where on your jaw would you say it is? Below the tooth? Towards the bottom where it connects to the neck? For reference, which tooth was it that had the infection? Have doctors adequately examined your lymph nodes and ruled out any kind of systematic infection there? Have you had any muscle examinations (or even biopsies?) of the sensitive parts of the neck or chest? Where in the neck would you say it is? What about the chest- is it muscle? Bone? What kind of pain is it? Burning? Throbbing? Would you describe the pain as similar to what you're having in your jaw (meaning is it uniform) or is it a different type of pain in different places? Do specific movements cause it to hurt more?Has TM dysfunction been ruled out? >irritate it. An oral pathologist says that nerve damage wouldn't do this - or >cause me to be hoarse (he said I'm probably just "tired" - ye gad!!) I got Right. I've found in my own troubles that doctors keep telling you what they "know" yet it's amazing how many things you can find up via research of instances where their "typical presentation" expectation was totally off.One Thought: Weight loss and hoarseness... Have they done any neck ultrasound for thyroid (hypothyroidism/ thyroid nodule)....Have they done any thyroid blood work? TSH(could be normal...need all thyroid lab work), Free T3, Free T4, thyroid antibodies (thyroglobulin(TgAb) & Peroxidase(TPOAb)http://www.labtestsonline.org/understanding/analytes/thyroid_antibodies/test.html.May be autoimmune!!
    Anonymous 42789 Replies Flag this Response
  • I've had the same neck/jaw pain....root canal (tooth still bothering me) However, I started off complaining of salivary gland (left side) / left neck problem...Gland felt swollen but ENT doctor said it's not and told me to go to dentist. PCP wanted to do stress test cause I was complaining of heaviness into chest. I didn't do stress test. I went to dentist who proceeded with root canal and said tooth was badly infected (left bottom molar). After antibiotics and root canal chest heaviness subsided. I've been on antibiotics 5 to 6x in the past 10 months. Dentist & chiropractor said I had neck nodes and were surprised ENT doctor said no neck problems. Still having lower jaw/ neck problems. Outer surface of tooth still sensitive to touch/ chewing/ pressure after root canal though (they've shaved that side down twice...still higher and sensitive still to gum line on that side).....root canal done 2 months ago and I still haven't had permanent filling cause it doesn't feel right... Told I had residual infection. I just finished another antibiotic one week ago. I was feeling fine but every time I'm off antibiotic for approx 7 to 14 days problems of swollen glands and jaw/ neck pain returns. ENT (I work with) says to get 2nd opinion with endodontist or neurologist. He says there's no need for imaging. I asked for ultrasound or CT with contrast. In three days I have appt again with dentist and may need to then see endodontist. I will from there try to get my PCP to order UTZ or CT (I'm hoping to save tooth first and want to rule out any salivary problems.) ENT doct says to pull tooth. I'm not even convinced it was ever a tooth problem because I take good care of my teeth. Yes, I'm 50 and this is my first root canal. However, Twenty years ago a dentist tried telling me I needed a root canal on another tooth....It's never been done and it's no problem still. I decided not to do cause 2nd opinion with another dentist said it was a sinus problem..(before I was a nurse)..after antibiotic no problem. Now, I'm also feeling throat fullness/ neck fullness but no noticeable swelling. (However, when I run my tongue on salivary gland the left one feels larger than right side). I do get foul taste occasionally not sure where the infection is coming from. Sometimes throat feels dry, left tonsil feels larger (but doesn't look swollen), and I cough. I'm an ENT nurse of 15 years and can't figure out why the ENT doc just won't do the imaging first before even thinking about sending me to a neurologist (he's going to order imaging 1st). Of course none of what my ENT doc has done has been documented so I'm starting to believe I'm not in his best interest. Sad I work for him and generate a lot of money for him. Very interesting to read someone else with very similar complaints of lower jaw/neck/ chest problems. Hx of tooth problems but even after tooth was pulled problem still there. That's what I'm afraid of and why I want imaging first. I may be wrong and may still end up needing to get it out. Oh by the way prior to a very very painful root canal procedure that required an anesthesia port I had a very very painful filling redone on the same tooth 7 months prior by a different dentist. It was so painful I was afraid to go back to him but sadly the root canal was even more painful. It felt like someone was drilling into my jaw bone and clear to the salivary gland. I know this didn't happen....but it sure felt that painful.
    Anonymous 42789 Replies Flag this Response
  • The fact that you are an ENT nurse and work for the ENT you are seeing is not in your best interests. You should definitely, without telling your ENT or the new consult, seek a second opinion. You have good experience and instincts....you should listen to your gut!The Face/Neck/Chest pain is something I can relate to as well. After the back lower left molar was chipped in a car accident in 2003, I needed a root canal. The tooth never stopped hurting or giving me a feeling of inflammation despite several trips back to the dentist. A referral twice to an endodontist and oral surgeon was fruitless as they both agreed that we could either redo the tooth or pull it. I opted to have it redone but it didn't help. Six months later (or should I say 5 years later) I gave up and had the dentist pull the tooth. It fell apart as he was pulling it and in looking back on the old xrays, there was a hairline fracture there all along, causing an underlying infection. In the meantime, I have had repeated doc visits to the ENT myself due to the mouth/ear/jaw pain/swollen tonsils/swollen lymph nodes/breast pain and was ping-ponged back and forth between ENT, GI, breast surg, dentist, neuro, and inf disease until I finally told ENT that she would be doing the tests I needed or I was calling the insurance company and reporting ALL of them. She did CT (no contrast dye allergy) which showed the nodes, Ultrasound which was more definitive and showed the nodes, and lastly MRI which showed nothing. I also pushed her to finally bopsy the oral mouth ulcers that initially she, the ID, GI, and neuro stated they did not see. I insisted that the neuro do some labs that were suggestively related to what I thought was going on (despite him rolling his eyes and trying to dismiss me) with a positive result for Myasthenia Gravis. I have been telling them about my left sided chest pain and weakness as well, but they weren't listening....filing it under the "basket disease" of fibromyalgia which I also have. The sad part is that I think a lot of fibromyalgia/chronic fatigue sufferers have many undiagnosed subclinical problems beause docs must chalk it up to that but then the problem goes untreated. Now, after much advocating for myself, we have a CT confirmation of a possible thymoma for which I am scheduled to have surgery in a week or so. I am quite scared but at least we have found something definitive that could be the reason for a lot of my symptoms, but they would have NEVER found it if I hadn't insisted on following my instincts (despite the rolling eyes, questions like "do you think you are stressed or depressed" or "do you have a psychologist that you see", "it's just your fibromyalgia" and somedays wondering if I was indeed a hypochondriac too) so....long story short,....don't doubt your gut. You can bet if your doctors had these problems, they would order every test until they found out what was going on. I hope that you will trust what you "know" about your own body and go forward despite any intimidation or feelings of being dismissed because you CAN get the care you all so deserve.....you must INSIST! Blessings!
    Anonymous 42789 Replies
    • August 25, 2009
    • 03:16 AM
    • 0
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