How Many Docs

did you go through until you were diagnosed with MAV?

Here’s the various diagnoses I got until I was diagnosed with MAV:

  1. GP - Eustachian Tube Dysfunction - February 2005
  2. ENT - Otitis Media & Concussion (he had an MRI of the head and neck done on me after I fainted and hit my head after taking tramadol prescribed by the GP). However, after the otitis media resolved, he suspected a neurological problem because extensive testing (ENG, etc.) came out pretty normal — February 2005. Referred me to neurologist.
  3. Neurologist - Unsure - Testing revealed some mild carpal tunnel and some mild thinning of the two discs in my neck. Also couldn’t explain audible clicking in both ears. He could hear it from 5 feet away. The audible clicking started after I fainted and hit my head several weeks before ----February 2005
  4. ENT #2 - Thought it was neurological as well- Could not explain audible clicking in both ears. He could also hear it from 5’ away. Middle ear looked fine. Couldn’t really diagnose me. —March 2005
  5. Otologist #1- Onset of Meniere’s — Diagnosed me quickly. March 2005. He passed away about 6 months later. Very good man…did his very best. Also couldn’t explain audible clicking in both ears. He’d been an otologist for 30 years…the first in my area of SW Ohio to perform an cochlear implant in the early 1980s…he had never heard that type of clicking before.
  6. Otologist #2 - Trained by Otologist #1 when he was in medical school, but with a different practice. Same diagnosis as Otologist #1. January 2006. Stayed with him exclusively until August 2007. Also couldn’t explain audible clicking in both ears. Still see him a few times per year for ear tubes. Good guy.
  7. Neurologist - MAV and probable Meniere’s. August 2007. Attributed audible clicking in ears to stapedius/stapedial myoclonus.

I have seen 2 other docs since the August 2007 MAV diagnosis.

  1. Neurologist - MAV, Cervicogenic Vertigo, probable SCDS. May 2008

  2. And last…but not least…my current and permanent doc. Neurotologist --MAV, Meniere’s, with some cervical vertigo and palatal myoclonus mixed into the fray…he got the ear clicking right on the money. He watched my throat while the ears were clicking. Note: There is an interrelationship between palatal and stapedial. July 2008.

It’s been a long road…and a lot of docs…but I just keep getting better.

Your story sounds very familiar. I went through about 8 so called ent specialist. Until I found a group of doctors at our University that specialize in ear/balance illnesses. They have diagnosed me with mav/meniere’s mix. The other 8 doctors gave me several different labels." I was a woman that couldn;t handle the stress in a Man’s working world. " “I just needed a shrink” “I was just stressed, that’s what was making me dizzy and falling down” "I was lossing my hearing and balance because I was getting old (i was 43 at the time). :?

But anyway, I have a great Doctor now. And even though I can’t say I’m better. I do have the right meds that help me through the dizzy spells better. And I’m handeling the spells better emotionaly, now that I know what is causeing them. :slight_smile:

My First neuro, said I had MDds, all symptoms fit.
It happened straight after I got off an international flight,
Yes… I fell of the plane. HA!
It was a stressful time in my life, leaving home for the first time ever, and first international flight.
To live in China for a year or more, if I could tolerate the country. yeh right! :shock:
A year later still there working 6 nights a week on stage singing dizzy, I wanted to die.

Then two ENT’s same diagnosis.
I was told to go home and live with it, with no medication…

My aura had always been, olfactory, ect… no prominent visual aura , except double vision, After other visual aura symptoms arrived, I saw another neuro , who said, you have stress, I said well if you’d been sick for 13 years wobbling around falling ect… you’d have stress too, stupid woman!!!

I tried to tell her of my visual probs, and asked her how someone could have these symptoms without headache and she said ON NO it’s very rare…. D’ough!
She was more interested in telling me how successful she was, sitting high in her over the top expensive office. :twisted:

She’d already taken my money for the EEG, that’s all she cared about.
She offered me xanax, within a week of taking VERY HIGH dose xanax , I had a really bad tinitus, I’d only ever suffered tinitus while having a migraine, and it always disappeared after a few minutes, always intermittent.
From the first day of xanax, I’ve had a permanent, rushing electric tower type tinitus, which has lasted ever since, it’s never left me.

I got so depressed after that neuro , it took a whole 2 weeks to pick up my socks and look in another direction, HORMONES I was 44, and knew peri could be a consideration, all blood readings were normal.
While I was there I told the menopause DR’s about my visual problems, she said oh you have mav, I said what the hell is mav, she sent me to another neuro, who within forty minutes had diagnosed mav , purely by my aura symptoms and my 13 years of dizziness.
It’s two years since then, and still rocking and roll, every day 24/7.

Oh and I cant count how many GP’s I’ve seen before that! Way too many!!!

jen

  1. GP - diagnosed me with ear infection - after 3 months of treatment with no effect, he sent me to ENT.
  2. ENT - diagnosed me with meniere’s desease and treated me for several years before wanting to do surgery. I quit seeing him and got a second opinion
  3. ENT- diagnosed as NOT having meniere’s or anything inner ear related recomended me to a neuro specilizing in dizzy/balance disorders
  4. Neuro - insurance company wouldn’t let me see specialized nuero, claiming that they were all the same. This neuro had never heard of MAV and was unable to diagnose my symptoms as they appeared inner ear to him
  5. Neuro - got new insurance company and they sent me to specialist recomended two years earlier. I got diagnoses of MAV and a treatment plan to work with primary care doc
  6. GP - following the spelialist instructions, we played around with the meds until we found something that worked.

As per the specialist since there is no real test for MAV, the only way find out if it is MAV is to treat the symptoms as if they were migraine related. Considering we found something that worked for me, and I am almost 100% during the summer, I would have to say that the specialist was correct.

  1. ENT - diagnosed with bilateral meniere’s. The only reason that I include this ENT was that I had an ear infection and the GP sent me to an ENT for some complications. I kept trying to tell him that I had MAV, but he had never heard of it either and had never heard of migraines causing balance or dizzy problems. I tried to explain to him about the migraine prentative meds and how they brought me back to a functional life, and he was mystified. He kept to his diagnoses of meniere’s and refused to give me the treatment for the ear infection that my GP had sent me there for in the first place.
  1. GP - postviral (nothing can be done)
  2. ID - postviral (nothing can be done)
  3. ENT - labyrhynthitis (nothing can be done - hopefully it will go away)

So i did nothing for years

Then my crash and COULD do nothing.

  1. ER doc - i’m a freak
  2. ENT - i’m a freak
  3. neuro - i’m a freak - let’s do a lot of tests and make me a lot of money anyway
  4. oto-neuro - MAV - let’s start one preventative after another with no clear dosing schedule or treatment plan
  5. Hain - MAV - let’s back up, get rid of some of this stuff, start over with clear treatment plan

I may still be a freak, but at least there’s a plan

Julie

Julie,

We still like you even if you are a freak. :smiley:

Brian

Do you really Brian ? ? ? :oops:

After all the nasty ENT tests (dont need to describe them, most of you would have experienced them), menieres that has burnt itself out (I was in my 20s then). Basilar migraine, then, more ENT tests London, including nasty calorics test, not conclusive come back in 3 months for the tests again (no thanks), then, endolymphatic hydrops (more ENT tests), then at Cambridge, an inner ear lesion, but got sent to Queens London where, vestibular migraine. In between, Lupus (after a year at the clinic I didnt fit all the criteria but high ANA levels at the time, antibodies to the thyroid). Now, its ME (Chronic Fatigue Syndrome) as well. In between they found B12 deficiency (I have injections for that). Told I have hyperventilation that causes the headaches!, that was the “in” thing at the time, told to get on and live with it, read in drs. notes “I cant understand why these patients insist on a diagnosis” amongst other things. Rebound headaches (I came off painkillers for 3 months on more than one occasions, it did not cure the heads). And so it goes on …
Best Wishes
Christine

Much luckier than you all.

ENT- ruled out meniere’s disease 10/06

GP- ran several test, nothing, gave me the Trans Derm Patch for motion sickness, this helped some. She said, “lets get you to a nuero”. 12/06

Nuero- first meeting diagnosed with MAV. Started on Topamax. 3/07

Almost two years later, GP moved, Nuero moved. 8/08

Visited new nuero. Oct. 7th after spinning started again in Aug. 10/08

Will meet new GP Nov 25th. 11/08

Although Ive had fewer encounters with the medical profession than you guys, some have been a bit traumatic…

  1. GP 1 - Labyrinthitis
  2. GP 2 - “Inner Ear” and then Chronic Fatigue Syndrome.
  3. ENT 1 - “I don’t know”
  4. Neurologist 1 - A stomach virus. :o
  5. ENT 2 - “I don’t know - just stay active and it will go away”. As I could barely stand, never mind ‘stay active’, I considered jumping out of the second floor window at that point.
  6. ENT 3 - MAV. I will always love that man.
    Then referred to (7) Neurologist 2 for treatment.

Chris - Re: the CFS/ME thing. I hope you don’t mind me saying and I don’t know your indvidual circumstances but for what its worth; Fatigue has always been a huge part of my symptoms of MAV and was definately the most debilitating. At one point my GP was really insistant that I had CFS. Since I have been feeling better in the last few days both my dizziness and fatigue is lessening. So I think it definately can sometimes be a facet of migraine rather than being a separate entity called CFS.

Anxiety
Burping Syndrome
Cancer
Gout
GERD
Colitis
Pancreatitis
Restless eyelash syndrome
Restless toenail syndrome
Restless sphincter syndrome

— Begin quote from “Heather”

Restless sphincter syndrome

— End quote

Could you give us a little more detail on that one? I think it might be helpful to the rest of the forum

Julie

— Begin quote from “Beech19”

Since I have been feeling better in the last few days both my dizziness and fatigue is lessening. So I think it definately can sometimes be a facet of migraine rather than being a separate entity called CFS.

— End quote

Absolutely - how could it not be. Think of what a mess our brains are in. mis-shooting all over the place. I’ve had the same experience. With every single preventative i’ve taken, i’ve felt more energy in my body. It made sense with the ADs, which were hitting dopamine and now norepi receptors, but it made no sense that neurontin or Klonopin !! or Topamax would put more energy into my body except that it was straightening my brain out.

Think about when you used to have classical migraines. I got extremely fatigued, during and especially afterwards. What a hangover! I spent the rest of the next day in bed. So now we’re in a 24/7 state - talk about a drain on our systems. We are the walking wounded and Brian is going to write our book someday! Are you listening Brian ???

Julie

Restless eyelash syndrome
Restless toenail syndrome
Restless sphincter syndrome

Heeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! :mrgreen:

— Begin quote from “Julie”

— Begin quote from “Heather”

Restless sphincter syndrome

— End quote

Could you give us a little more detail on that one? I think it might be helpful to the rest of the forum

— End quote

:mrgreen:

**Oh come on Heather! ** You are just like Brian - you think I’m kidding! Did you see a smiley face anywhere in that post??

Details!!! We want Details!!!

For the good for the forum!

jul

Here ya go Jules :smiley:

[attachment=0]bart mooning.gif[/attachment]

I asked for it - I got it!

Okay, here’s your smiley, bad Heather!

:mrgreen:

you must have a library of inappropriate .gif

Yea, maybe we could just start a new thread for “innappropriate stuff” .

Probably be the most looked at thread, except for those that come here looking for much needed info. :wink:

Don’t look at me !!! You can start the thread! Or better yet - HEAAAATHEERRRRR!!! It’s way time that you got yourself into hot water. I’ve HAD IT! I’m going to become Heather 2 and MAVoy 8)

Nice to see ya Jude :slight_smile: