could really use some help

[Arpeggio135]

Hello all, excited to see this community.

I found you all searching in a my many desperate attempts to find out what’s wrong with me.

Reading all your posts give me some kind of hope. I appreciate you all, and wish all of you best in your journey.

For me, It all started with a little tickle in my left ear little more than a year ago, almost like there was a little bug in there, moving around. That progressed to a feeling of fullness and then the tinnitus and hearing loss slowly started progressing on my left. I am a musician so this was very concerning to me. I went to urgent care which was useless, they didn’t think much of it and told me to see my primary which took about 3-4 weeks to do so.

Finally went to my PD who again also didn't think much of it did some routine bloodwork that I was due for and referred me to an ENT which took about a month to see. In the meantime my symptoms, they escalated to some numbness, a weird numbness in my mouth, especially my tongue. With this numbness I also started noticing my teeth crowding. Strange I’ve had straight teeth my whole life.

by the time I saw the ENT I had a good amount of fullness in both ears and crazy loud tinnitus, and along with my mouth numbness I was also starting to feel it it in my hands and fingers. ENT didn’t think much of my numbness, as it wasn’t really in his wheelhouse kinda symptom thought my hearing issue might be (ETD, Eustachian tube dysfunction) gave me steroids and Claritin, said it was probably allergies, which I never really suffered from in the past. Anyway, this did not help at all and my symptom's continued to escalate, week later he did a balloon synoplasty to open up my Eustachian tubes, absolute horrific procedure btw. With great frustration this did not help either. Ugh. Fullness is still in both ears, tinnitus is screaming and hearing loss is progressing and now affecting my pitch. Being a professional musician my whole life my pitch and ear are rather good so that got more concerning. And, because of the numbness I was discovering in my fingers playing guitar, piano or any other instrument just didn’t feel right, or now, sound right.

So after a few visits and a procedure with the ENT he didn’t have any answers for me and refers me to a 2nd ENT, which as you all probably know, this process takes weeks even months to see.

Well, finally got in to see the 2nd ENT and he also did not produce or diagnose anything, except for a big bill. He did however managed to run me down the hall to an audiologist to do a hearing test to confirm yes, I have hearing loss and they gave me the whole pitch on hearing aids. I listened to as much as I could, because to my good fortune, in that department I have 2 cousins who are audiologists, who are in the process right now of setting me up with a nice pair

So, after all that this 2nd ENT didn’t do much to help or diagnose anything. At this point I am 5-6 months into symptoms of hearing loss, mouth numbness is continuing to worsen and my taste is now off and teeth are crowding even more.

During a routine cleaning a few months ago I show and mention this to my dentist.

He notices this and he refers me to an orthodontist. I see the ortho and she tells me to see a TMJ specialist.

It’s absolutely crazy.

For me, the symptoms get worse as the day goes on, especially the numbness in my mouth. I wake with it at about a 2 on 10 scale by early evening it’s at about an 7 and I can now feel the numbness creeping to the back of my tongue and down my throat which makes eating, chewing and swallowing a concern.

At this time it gets so bad that i start thinking this has to be maybe a stroke or something, something! Something is terribly wrong. So, I go to ER and sit there for hours, even with my symptom's. Finally I get in and they draw blood and do a CT scan of my brain, about a hour later they say, we are admitting you and we put in a stat order for MRI on head and neck. Which, they finally do at 3:30am, but I’m hopeful cause I’m thinking, for all this they have to have found something., Yes, finally they found something, a name for what I have.

But, the next afternoon after talking with a few different doctors of my symptoms and the battery of blood test, in all they took about 16 vials. Guess what? Nothing. Nothing? How can that be?

Said blood work is ok and scans and MRI show nothing. That evening they discharge me, with my symptoms just as bad as when I was admitted in. So scared cause what now, where can I go now. Hearing loss, screaming tinnitus mouth and tongue numbness so bad that swallowing or chewing as to not choke or bite my tongue have become an issue. It’s all just as bad, if not worse than when I was admitted in. Nobody seems to know whats going on.

Been about a year and a half now with these symptoms and I still have no answers. Saw my primary again few weeks ago, ran a bunch of new bloodwork on me which came back ok and requested to see the bloodwork, scans and MRI taken at hospital. Still waiting on that.

So here I am. Continually searching trying to find something or someone who can relate to my symptoms or similar.

Reading all your posts gives me hope. Maybe a new direction. Acoustic Neuroma. I’ve never heard of it, nor has any of the many doctors I’ve seen mentioned it. You all here have discovered your illness and it seems to have the closest symptoms to what I am experiencing. it’s horrible, and not getting any answers is so frustrating. It’s draining me terribly

Will continue reading your posts and hoping. Thanks for reading mine, reach out if you have any insight or can relate. Wishing you all the best

[Miker418]

Doesn't really sound like an acoustic neuroma to me, because that would surely show up on an MRI scan - mine does, and it's very small. Sometimes, even our seemingly quite advanced medical professions have difficulty arriving at a diagnosis. Hope you get sorted out though, of course.

[flappers]

what an awful time you’re having, I’m so sorry you have not been able to find the answer to what is going on for you. If you’ve had an MRI of your brain/head/neck that would have shown if you had an acoustic neuroma, even a very small one. The clue also is in having only one sided hearing loss/tinnitus, and it seems you’re having trouble both sides. There is a very very rare genetic condition which can cause one each side but it absolutely would have shown on scans. As with any of us with either diagnosed conditions or struggling with health, all you can do is focus on what helps you feel less stressed, really attend to yourself doing those things, and breathe. Anxiety and stress make EVERYTHING worse, so I do hope you can find your calm in the middle of all that is happening. 💐

[Arpeggio135 in reply to flappers]

Thank you for your reply and feedback. I’m really having a tough time with this cause I’m not getting any answers and it just keeps get worse. Both TMJ doctored were if not help and my primary doesn’t seem that concerned. He referred me to an oral maxillofacial doctor but when I called they were pretty short and ask why my Dr referred you to us. Told her maybe a TMJ issues. After a bit a time on hold she said, “well if is a TMJ issue he can diagnose it but he doesn’t treat or deal with that. In sanely frustrating. My mouth and tongue get so numb that it has gotten hard to eat. Chewing and swallowing have become a real issue cause I can’t feel properly so my meals have become mashed up bananas, yogurt or applesauce.

The hearing loss and tinnitus is primarily in my left ear but it is affecting my right as well. So frustrated don’t know where to turn for help next. Thanks for reading and your feedback. It helps

[Chocchomp]

Hi. What a horrid time you’re having. The MRI would have shown an AN if you have one but you are very lucky that nothing is showing up. I would definitely go down the orthodontist/TMJ specialist route, especially if you could get them to work together. As your other replies have mentioned, AN normally only give problems in 1 ear unless it’s caused by a genetic issue. As your’s is both sides and your teeth are moving it is definitely worth contacting your orthodontist and TMJ specialist again.