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Wrong diagnosis!


#1

Over 4 months ago I experienced dizziness, rocking sensation vertigo, headaches, neck pain, ringing in the ears, pain in my ears and the list goes on and on. I went to 2 different ENTs, an allergist and a neurologist. I had an MRI done, CT scan of my sinuses, a VNG test from an audiologist and so much blood work I lost count. All of the doctors were dumbfounded and could not give me a diagnosis to save me. My previous neurologist tried multiple different medications that honestly made my symptoms worse. When I further explained to her my symptoms (balling my eyes out in the process) she then told me that she doesn’t believe it’s MAV but has no idea what it is and couldn’t help me any more. I was devastated and yet happy because I never fully believed it was MAV (my gut was telling me it was something else). I kept researching for endless hours (or so it seemed) and finally I found something that caused all my symptoms, including the vertigo, headaches, eye pain and this god awful vibration feeling throughout the back of my head. After seeing a specialist I found out it was TMJD (temporomandibular joint dysfunction). When I told the neurologist all of my symptoms started when I blew up my daughters swimming pool she assumed that’s what caused the MAV attack. In actuality by doing what I did I blew my jaw out of alignment and slipping it out of the condyl disc. On the MRI images you can clearly see the displacement of my jaw. Every doctor I showed my MRI disk to completely overlooked this fact. I found it myself and showed my dentist who the confirmed my actual diagnosis of TMJD. Currently I still have constant rocking sensation vertigo, headaches and even eye pain but I see a physical therapist weekly and just got fitted for an orthotic splint to put my jaw back into proper alignment. This will rid me of my debilitating symptoms. The reason I want to write my story to you guys is because I never ever gave up. I listened to my gut which pointed me to the right diagnosis and the right treatment. If anyone on this forum is not convinced that you have MAV like I was, keep researching. On a list of my symptoms I’d give all these specialist, within the very first 4 symptoms was “jaw pain”. This complaint was overlooked time and time again for over four months. With all these doctors in our face trying to do loads and loads of testing and shove medication down our throat, you truly need to be your own advocate! Many of my symptoms have passed through physical therapy and the more major symptoms like the vertigo and headaches will pass once I start splint therapy. Listen to your gut instinct. I never believed I had MAV but kept taking the medication the neurologist prescribed me because I was so desperate. I am not at all saying everyone has had a wrong diagnosis, what I am saying is I was given a wrong diagnosis even when I told them I don’t think this is what I have. Please be your own advocate!


#2

i literally have all the symptoms you listed here. Eye pain, rocking, neck pain, everything. I haven’t seen any specialist yet, but how bad was your jaw pain? i do have clicking and do grind my teeth, but my jaw pain is not severe. I’m not completely sure if i have MAV either, but good for you on finding the right diagnosis!


#3

As Hain says, TMJ and Dizziness are both common, but doesn’t mean there’s a causal link:

http://www.dizziness-and-balance.com/disorders/symptoms/dental.html

I’d disagree a little but I believe it can be the opposite: anxiety causes you to be tense more often and for longer leading to a stiff jaw that can spasm and develop into TMJ.

I have TMJ which is slowly improving. It came on long after dizziness started. I have a feeling it’s stress related.

The TMJ btw is improving without any devices. I simply had to go easier on my jaw, eg try not to fiddle with tongue and teeth, don’t bite food (or nails!!) for a while, eat softer foods you chop up etc. Retrain yourself to give the jaw as much rest as possible.


#4

My jaw pain surprisingly wasn’t too bad but at times I’d get a sharp pain and burning sensation in my left cheek which is the side it’s dislocated on. If I were you I’d make an appointment with a dentist that specializes in TMJD just to rule it out! My dentist I go to now for the TMJD stated that a lot of my symptoms could have mimicked MAV so he wasn’t surprised I had that diagnosis at one point but he assured me from my MRI images it was definitely TMJD and not MAV.


#5

Everyone is different with how bad it can be! My left TMJ is dislocated and the condyl disc has completely slipped out of place. From my MRI results you can clearly see the left inner ear is completely inflamed from the dislocation of the joint and condyl disc. Of course like I stated everyone is different with their symptoms but I just wanted to share my story!


#6

Gosh that sounds nasty. Best of luck with that resolving. I’ve found TMJ for me has been easier to improve but it’s no walk in the park. You have to change your behaviour quite a bit to rest the jaw, cutting out any bad habits, but if you do it will reward you. Took at least three months to stop clicking regularly, but occasionally it still clicks or cracks. Ouch!

Hope you feel better soon!


#7

That’s really interesting to hear. How lucky that you’ve found something in your scan.

I have had some major TMJ issues for the past few years. A CAT scan showed early stages of osteoarthritis and, same as you, full disc displacement. I had this scan about 2 months before my MAV started so not long ago. Never noticed any strange symptoms before MAV although I had developed some serious headache issues around the same time.

Did they do an MRI for your ear as well as your TMJ? I think mine may have excluded the ear so I might definitely look into getting an ear scan after hearing your story.

What does this mean for you? Do the TMJ issues and MAV go hand in hand or are you only suffering from TMJ issues? What’s your line of treatment?

All the best!
Danna


#8

Basically when an ENT diagnosed me with MAV and sent me to a neurologist it was a totally wrong diagnosis. I kept doing more and more research and came the idea of TMJ because my bite had been totally messed up for years but never thought too much about it. When I blew up my daughter pool I completely messed all the muscles and the condyl disc up. My original MRI was only for my inner ear and brain. The ENT said there was slight inflammation of my left inner ear but not even to diagnose me with vestibular neuritis (the viral infection) so that’s when he gave me the MAV diagnosis. I have a very swollen muscle in my neck right under my jaw line and that was the main reason of why the neurologist retracted the MAV diagnosis (thank god) along with more in detail symptoms didn’t match up. My line of treatment is I continue with physical therapy for the muscle and nerve inflammation and I also have been seeing a dentist who specializes in TMJ and he fitted my for orthotic splints. The splints will allow my condyl disc to slip back into proper place along with my actual temporomandibular joint.


#9

I never in my life thought TMJ could cause this. Can I ask what your symptoms are? Do they mimic MAV exactly? Did any medications you were put on relieve your symptoms? I see a maxillofacial surgeon for TMJ and he told me amitriptyline is an excellent treatment and this is incidentally also a treatment for MAV.


#10

I never thought it could either. A list of my symptoms from the very beginning are dizziness, rocking sensation vertigo, headaches and at times migraines (at the top of my head and back of my head) jaw pain and jaw fatigue and my jaws click and pops out of place, ear pain/itching/ringing, sinus inflammation symptoms without their actually being an infection, painful eye strain and also pressure behind my eyes that usually causes double vision, neck pain and neck stiffness, I have tons of knots in my neck, pain in my shoulders which has lead to tingling and numbness in my fingers because of the straigned muscle pinching nerves, because of my arraigned shoulders it also causes strained muscles in my back and down to my hip which causes tingling in my toes, the muscles in my cheeks are inflamed and tender. I never was prescribed Amitriplyne but I was given Zoloft which only helped with the anxiety and stress all this caused me, since I was never convinced I had MAV I refused to start anti-convulsions on blood pressure medications. I never had sensitivity to light or the room was spinning vertigo, from what my old neurologist told me that’s usually the vertigo people suffering from MAV deal with. I think I got all my symptoms down, if I remember anymore I’ll add them!


#11

Does the ringing occur in the ear that’s on the same side as the affected joint? Did you experience any cognitive difficulties with your symptoms that people with MAV often complain of like brain fog? I’m interested to find out if TMJ can have the same affect on cognition, memory and feelings of ‘unreality’ like problems with the vestibular system and MAV can.

I considered that perhaps my symptoms were cause by my TMJ but my tinnitus occurs in both ears and only my right joint is affected.

I wouldn’t be afraid to give amitriptyline a go if it’s offered to you. I’ve been on it before for lengthy periods of time for other issues and it helped me a lot. I have been on anticonvulsants and that’s when I started really understanding what side effects are!


#12

Oh yeah I get brain fog a lot. I also have gotten a sense that I’m disconnected from my own body but since doing physical therapy, my PT has really worked on my nerves so that’s helped a lot. I get pain in both ears because the right and left joint are both trying to compensate for the inflammation. I also get ringing in both ears


There’s one image from my MRI. Look at the right side (which is actually my left TMJ) you can see the displacement and a huge difference from the right side. There’s also inflammation in my inner ear.


#13

Wow, that looks REALLY displaced! No wonder it’s playing up your ear!

Who did you have to see to get someone to acknowledge that TMJ was causing your symptoms? I’ve seen a neurologist, neuro-otologist and maxillofacial surgeon and none of them even cared to look at my scans or reports regarding my TMJ. They don’t seem at all interested and are solely focusing on MAV. I know it could well be MAV only, but I would really like to assess whether my TMJ could be a factor.


#14

I would do a basic search of a neuromuscular dentist in your area. Look at some of their websites and see if TMJ is one of the things they specialize in. At least a dentist who’s one of many specialties is TMJ.


#15

Brandi how are you getting on?


#16

Hi I am in the exact same boat. Wearing splint for 2 weeks already but still no relief from dizziness. Brandi how did the splint therapy go? Did you get relief from dizziness and how long did it take?