Hello,

I would really appreciate your help on what could possibly be wrong with me.

In a nutshell: The majority of symptoms started in January of this year most noticeably severe dizziness/vertigo, as well as headache/nausea. Since then, they have been gradually getting worse, along with the gradual appearance of hard bony 'bumps' in the ear/jaw/neck region (have counted 5 specifically). More recent symptoms include throat pain (in lower neck, feels like it is being squeezed), sensation of lump in throat when swallowing, rapid heartbeat, tingling in chin.

I’ve seen my GP, ENT and dentist. My GP thinks it’s my anemia causing my dizziness. My ENT said it is TMJ (without conducting any tests or doing a thorough examination). He said it didn’t look like an ear infection (mostly by visual inspection). My dentist isn’t really sure but thinks it's TMJ.

Here is a more complete breakdown of my symptoms:

Worst symptoms

Dizziness/vertigo
- head feels like it is constantly spinning/unsteady
- first symptom started at the end of january
- one of the most noticeable and severely felt of symptoms

frequent nausea (unexplained)
- severity of nausea varies throughout day
- but is definitely constant - have never experienced a bout of nausea for this long

headache
-pulsating sharp pains
-mostly in upper back area, often in morning, varies throughout day
-used to hardly ever get headaches

several masses/weird bumps:
*all the ‘bumps’ feel similar (hard, bony and relatively painless when touched – also feel like they are close to the bone)
- tinier bumps in neck/jaw have gradually appeared

mass inside right ear canal
-one of the first things i noticed when dizziness started
-started off as a swelling in the ear, and accompanied by clicking sound
-sharp/clicking sound has stopped, but replaced by a dull/pulsating sound (which I can hear when lying against it on my pillow)
-mass seems have hardened/gotten larger
-occassional ear pain/ache (non-specific)

hard bony lump in left side of jaw next to ear
-painless
-feels hard and bony (like a ball)
-definitely asymmetrical (only on this side and not on other side)

mass in back of lower neck
-makes a loud cracking sound when pushed
-doesn't hurt when pressed on (slight soreness)

beginning to feel mass in left ear canal

other symptoms

Severe fatigue
- have noticed that I’ve been more tired than usual
-constantly want to put head down or take a nap (feel like sleeping all the time)

intense ear itching
- first noticed that ear began to itch as hard/bony lump began to swell up and ear started clicking
- is quite frequent and extremely ticklish all the time
- feels internal and not coming from an external source

throat pain
- feels like lower region of throat is constantly pressed on or tightened (especially on the right side)
- starting to hurt when i swallow (some difficulty swallowing - feels like something lodged in throat when swallowing)
- throat feels like it's increasingly being closed/tightened or there's a lump
- throat pain is not like a typical sore throat i usually get when sick
- slight trouble breathing (as neck is tightened)
-lower neck also feels like it’s pulsating/throbbing

heart palpitations
-heart seems to be beating faster than normal
-can often feel heart pounding in chest area even when not doing anything strenuous
-when palpitations increase, often get chest pain and pain when breathing
-heart pounding radiates throughout neck and ear/jaw (which are throbbing/pulsating)
-sometimes heart is beating so fast, that I can’t fall asleep

sore on lower lip (painless but hasn't healed)
-first noticed a sore on lower lip about 2-3 months ago
-sore has not healed since
-feels like sandpaper/rough/scaly and generally does not hurt
-constantly peeling; turns white sometimes, usually reddish
-some days it is larger than other days (but always there)

clusters of canker sores (painful but come/go frequently)
-in November last year, had an unusual bout of canker sores (very large, painful, and took about 2-3 weeks to heal)
-have been getting these ‘clusters’ on and off since then (most noticeably in December and January)

weird sensations in chin/scalp
-one of the more recent symptoms
-constant tingling sensation in my chin (sometimes scalp, but most primarily in the chin area)
-chin feels ‘strange’ like it’s about to go numb (almost like it’s twitching)

My concerns

All the health care practitioners I’ve been to, seem unable to explain what these symptoms mean and why they have been appearing together. They offer explanations that might explain some of the symptoms, but not all of them. Most concerning, the small bony lumps in my jaw/neck/ear remain a mystery to me. Despite all my doctor’s visits, I believe there is something wrong.

My doctor offered to book me a CT scan, which I think is probably the best course of action to take in getting a diagnosis. But at the same time, I feel conflicted about it due to the potential radiation exposure (which I heard, and I’m not sure if this is reliable, can have long-term negative effects). I’ve done a lot of internet research and visited health forums in hopes of clarity. Based on other people’s accounts of their symptoms/diagnoses and lists of symptoms from health sites, I’ve come up with the following concerns (which are just best guesses):

-osteomas (bony growths in ear/jaw)
-squamous cell carcinoma (especially the sore) in head/neck/ear
-perhaps an inner ear disorder, or ear infection
-hyperthyroidism (or thyroid disease)
-thyroid nodules
-autoimmune disorder
-viral infection

The things I could really use your help on is:

-What could be wrong with me? It doesn’t matter whether you are ‘right’ or ‘wrong’. I’m interested in hearing your response whether it’s based on your knowledge or personal experience. Even if you have no idea, I'd still like to hear what you have to say.

-What is my best course of action (based on my doctor’s visits) in terms of getting a proper diagnosis (for example, thyroid ultrasound, CT scan, x-rays, biopsy, physical examination, etc.)? I’m leaning towards less invasive methods of examination (that involve minimal radiation exposure) at the moment, but am willing to accept the risks of a CT if necessary.

Sorry this is a really long posting. I just want to be as thorough as possible (it also helps me clarify my symptoms).

Please, any response would be greatly appreciated. I have been suffering for months, without much support or acknowledgment of my symptoms. My head is spinning and my heart is pounding as I type this. I need to find out what is wrong with me. I almost want to give up because nobody is listening.

Hi and so sorry to hear of the trouble you have been having. Has you doctor carried out thyroid function tests etc? If not, change your GP! Otherwise I wonder if you might be suffering from some sort of anxiety, which has come about from your being anxious about your symptoms and then anxious about the fact that you do not seem to be getting any satisfactory answers.

My mother had similar symptoms which were diagnosed as labyrinthitis, inflammation of a part of the brain called the labyrinth which makes you feel giddy, unsteady and sick.

Could you maybe try some relaxation techniques to see if they help, yoga is a good one. Keep in touch and we will try to think of anything that might help you.

Thanks for the response robT.

I actually suspect that I could have some kind of thyroid disease. My lower neck is throbbing a lot and when I press on it (where the thyroid is), I can feel my head pulsating along with it. The odd thing is, is that my GP had my TSH levels checked (part of my blood test) and they are apparently normal.

So now I'm wondering if the test was unreliable? or if it's possible to test negative for hyperthyroidism yet still have a thyroid disorder? Not sure how. But it's driving me mad because the symptoms say otherwise! Anyway, yeah, I've noticed that a lot of my symptoms are associated with hyperthyroidism (and oddly enough, hypothyroidism as well). I've also had other chronic and unexplainable symptoms for many years such as dry mouth, bad breath, IBS among others - which, looking back, could very well be linked to a thyroid problem.

Anxiety could be part of it. But what i'm experiencing now definitely feels like it's more on the physiological/physical side of things (like it's my body more than my mind). I've had generalized anxiety (mostly mental) before, and this is definitely not it. As for relaxation, I think physiotherapy would be good. But I'd prefer to find out the cause(s?) of my symptoms first before doing that, and to make sure I have nothing serious.

With regard to labyrinthitis, do you know how the doctors figured out your mother had it? From what I've read, it sounds like it's something that goes away after a few weeks. Although it could be linked to my symptoms.

Thanks for sharing your thoughts. I really appreciate it.

Hello again and thanks for sharing some more of the details. The labyrinthitis that my mother had I think as diagnosed as a process of elimination, in other words they satisfied themselves that she sis not have anything more serious and then decided that this is what it could be.

I am surprised that your doctor has not been more proactive in finding out what is the problem with all those pretty unpleasant sounding symptoms. Do you think it might be worth seeing someone privately just for one appointment (which would cost about 140) maybe an endocrinologist. Just to get another take on it and to give yourself more time with a specialist as a private appointment would allow you, to go into everything? I know that one of the other posters on this site, amanda5356 does this, she has a business finding specialists for people who have trouble finding the right help. I am taking it you are in the UK?

I have definitely considered seeing a private doctor. However, the main reason I haven't is because it's very expensive (especially as a recent university graduate who just started working). I live in Canada so we have a public health care system. And there are private specialists available, but they are quite costly. I'm not sure how much exactly, but it would probably be in the hundreds or even thousands of dollars. But you are right that a private doctor is worth considering.

Right now, I'm trying to find a different (and perhaps better) doctor who is accepting new patients, and who will refer me to a specialist, preferably a different ENT and/or an endocrinologist. I'm also going to give physiotherapy a try, and have a thorough dental examination done (including my jaw bone).

It's true that my doctor hasn't been proactive in examining my symptoms - and thank you for acknowledging that. I think there are several reasons for this. 1) My blood tests are (seemingly) normal. 2) The ENT she referred me to doesn't seem to think it's anything other than TMJ. 3) My symptoms are relatively vague and don't seem to point at anything specific. On a more general note, specialists and medical testing are also costly, so doctors tend to be reluctant with giving referrals.

All in all, I feel like my symptoms are worth probing into. They may be a bit all over the map, but there's definitely something amiss here. And in my opinion, my doctor hasn't been adequate in her examination.

Thank you for listening and for sharing your comments!