I guess I'm diagnosing myself, what do you all think?

[tbs123]

I hope I can make this short...but it's a long story!

About a year and a half ago I began to notice an odd tingly sensation in my upper lip  It tingled and felt kind of full.  Since then, whatever it is has progressed to my whole face and even to the top of my head.  It is there almost all the time.  I think my face is swollen, but not visably.

I have had numerous strange twitches and misc neurological symptoms.  I have had dizziness as well as my balance not being what it used to be.  My right eye twitched for about 5 months.  Thankfully, that has stopped.

I have had an MRI that came back unmremarkable.  There were a few spots and a gliosis, but the neurologist was not impressed by those.  I saw a rheumatologist.  My ANA was somewhat elevated, but all of his tests came back negative.

I've been treated for sinus and allergy problems...that's it.

So, last week I noticed a fullness in my ears when I woke up.  I also noticed that I was not hearing nearly as well out of my left ear as my right.  It was very evident when I used the phone. 
 
So, off I go to my Internist.  He looks and ONCE AGAIN says, it's not your ears, it's your sinuses.  He ignored the fact that I couldn't hear and that I kept saying " what?" to him, because I couldn't grasp what he was saying.  Also, the left ear seems a little numb.
Like a good girl, I go back on the zyrtec d and nose drops, and nasal spray. 

Today, the right ear seems fine, but not the left ear.  The hearing is better, but it still feels full, and numb, with that rushing water sound.

I felt pretty lethargic this morning and decided to google for info about the ear thing.  So, that is how I got here.

What does this sound like to you?  Could I have found my problem?

Help!

[nancyann]

Hi tbs:   The MRI needs to be done WITH contrast - check to see if your MRI was with contrast.
Also, when I went to the ENT they did a hearing test 1st, saw a dramatic difference between
my right & left side hearing, then immediately ordered an MRI with contrast.
You had twitches near your right eye, but decreased hearing in your left ear?  hmmmm,  I don't know
what this could be, but I'd start with the hearing test, then MRI with contrast & take it from there.
Good luck my friend,  Nancy

[tbs123]

Thanks nancy,

I just know know where to turn.  I've about given up on my Internist.  The Rheumatologist suggested to him that I be referred to an ENT, but he never mentioned it to me. ( I saw the report)

The neurosurgeon likes to schedule follow ups, but he just sits there and scratches his head.  On my last visit he gave me some amytriptilene to help with sleep.  I felt it made the symptoms worse, so I stopped it.

The ear business is new.  I skipped the last January visit with the neurologist, because I felt fine.  I've learned to live with the face thing and other symptoms.  When this came up, it lead me here.  When I read the symptoms included facial tingling, dizziness, and hearing issues, I thought maybe....  Mostly I am fine, but this business has had me down and out a few times.

I guess I should call him and schedule another appt.  I have just been so frustrated.

[leapyrtwins]

tbs -

ANs have various symptoms.  Mine started with a full feeling in my ear and diminished hearing - most noticeable when I held the phone to my left (AN) ear.  I thought at the time that it was a sinus problem and I let it go, but I wish I wouldn't have.  I eventually went to my ENT who ordered an MRI with gadolinium contrast and it showed my AN. 

You may or may not have an AN, but as Nancy points out, starting with a hearing test would be a very good idea.

Let us know what happens,

Jan

[ppearl214]

hello tbs and welcome.

As others have noted, the only way to truly determine if you have an AN is to have an MRI with constrast.  Although your past MRI was unremarkable for an AN (not sure if contrast was used or not as you did not state), it can be very dangerous to attempt self-diagnosis and I would ask that you work with your treating physician  to work arrangements to have an MRI with contrast done.  For me....... why try to guess and run emotions in trying to figure out... please let a professional in the medical field treat. 

Please hang in there.... and good luck to you with learning what causes you issues.
Phyl

[4cm in Pacific Northwest]

Whoa does this story sound familiar....

Does you insurance allow you to see a specialist without a referral from your PC. Ie do you need your internal medicine doctor to get a referral?

You need an MRI done with (and without) contrast for an accurate comparison and diagnoses.

It does sound like there is some sort of internal nerve pressure there – but “what exactly� you will not know unless MRI (done with contrast happens.

I suggest you get to an ENT. If your internist is uncooperative – do what  I did – leave the practice and get someone new. I went to a DO as they have equivalent  training to an internist … plus….
http://www.osteopathic.org/index.cfm?PageID=ado_whatis
My new doctor’s nurse practioner found the hearing issue in the first wellness check-up - Fall 2006. I first complained to my internist in 1999 of tinnitus and vertigo … If we had addressed it then I may have still had a small enough tumor to qualify for radiation… but we finally discovered it a 4 cm…7  years later

The bottom line is that I had to be my best advocate and the one to keep pursuing the issue …until I got an ‘accurate’ diagnoses.

MRI with contrast…. MRI with contrast… MRI with contrast.

Did anyone mention an MRI with contrast? (Just a gentle tease  plus a hug ) Know that you have a support group here.

Keep moving forward!

4

[neal r. lyons]

Hello- Since you do exhibit some symptoms that are common to acoustic neuromas you need that MRI w&w/o contrast to be 100%  certain.

I experienced tingling that began below my right side lower lip and spread rapidly up that side of my face to include the r. side of my head.  It did lessen some but never disappeared completely.

It was determined later(a few months)-following an MRI w&w/o contrast that I had a tumor and the tingling was due to the involvement of the tumor with the trigeminal nerve(the nerve responsible for sensation)

That is not to say that your case is like mine.  I'm sure there can be numerous causes for such tingling.  However,ruling out an AN would likely be a plus for you.  Best wishes-Neal

[fbarbera]

Persistent tingling on my right lip was my first symptom.   I had some right side hearing loss but it was so minor I didn't even realize it was a problem (just thought it was normal that I had to ask people to repeat themselves more often than others).  When the lip numbness wouldn't go away, I asked my primary care doctor about it, who sent me to a neurologist, who ordered an MRI (yes, with and without contrast) -- and lo and behold, there it was.  By the time I had the MRI, a couple of months had passed, the numbness seemed to have migrated to other parts of the right side of my face, and I had a definite overall sense that something was amiss in my body. 

In any event, I think it makes sense for you to get a definitive answer on the AN diagnosis.  Cross-examine doctors and get whatever tests you need to rule this in or out. 

And by the way, if you have an AN, it is not the end of the world.  I have a big one and it wasn't fun dealing with the diagnosis, but I'm now totally fine.

Take care,  Francesco

[tbs123]

Thank you all for taking the time to answer.

I am going to call my neuro. today and double check on the MRI.  I cannot remember if it was with or without contrast.

Today the left ear is at it again.  It feels full, maybe a little numb, and the hearing somewhat diminished.

You know, I also feel a little like I am on drugs...but I'm not.  That has happened before.