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  • Doctor experienced with labyrinthitis/vestibular system issues in San Diego area?

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    Old 04-28-2010, 06:26 PM   #1
    wil24
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    Doctor experienced with labyrinthitis/vestibular system issues in San Diego area?

    Hi -- this is my first time posting, but I've read through quite a number of the posts on this board with great interest as they seem to pertain to my condition.

    The crux of my problem is I think I've been suffering from de-compensating labyrinthitis or some other similar vestibular ailment for about a year and a half now, and have seen numerous doctors/neurologists about it, with no answers. My symptoms have been returning as of late and I would like to really get this diagnosed, but don't see any point to going to another doctor who doesn't seem to know anything about the topic. Can anyone recommend a doctor experienced with these sorts of issues in Southern California, preferably near San Diego?

    To give you a bit of history: for over two years now, I've been suffering from repetitive strain in both my forearms. One symptom of this was a slight tingling and denervation in both my arms. After cycling through the medical system with this issue for a bit, I eventually saw doctor who recommended a blood test for a Vitamin deficiency. I went in, got the test and woke up the next day with an unsteady feeling. Not vertigo, not dizziness, but a sense that my equilibrium was off. This was joined within days by lethargy and fatigue and brain fog (general slowing of thinking, feeling overwhelmed while shopping etc.) as well as eye aches and eye headaches.

    (The reason I mention the blood test, is that I have a suspicion that my condition is viral labyrinthitis caused by something passed during the test.)

    I was seeing an orthopedist at the time and he, concerned about MS, ordered a brain MRI. When the MRI came back they did see one area on the right side of my brain that could indicate a lesion (lesions being a potential indicator of MS.)

    So I quickly scheduled an appointment with a neurologist waited a month and went in. He immediately said it was not MS but couldn't really make any diagnosis. I had a couple more visits with him, and then he referred me to another neurologist, one who specialized more in the brain. My various symptoms were on/off during this whole period, but mostly on. The eyes were the one thing that did get fixed. I saw an ophthalmologist several times and eventually she noticed that my eyes "dried-up" very quickly after I blinked. Liberal application of fake tears essentially solved the eye aches.

    I had a visit with the more brain focused neurologist and he reopened the concern with MS but seemed to think it was unlikely. (For reasons I've since forgotten, my particular lesion didn't really match the MS profile.) I brought up up something I'd read about, labyrinthitis, but they said they'd have to rule out many other things before they could consider that.

    This was about five months after my symptoms initially appeared. I had one more visit with the brain neurologist. He still had no diagnosis though suggested the possibility of migraines; I believe what he was referring to is what I now know to be called "vestibular migraines" though that's not the phrase he used.

    At this point, with my short-term finances ruined by both the repetitive strain and equilibrium issues I had to leave the town I was in and move in with my dad. However, the equilibrium issues did seem to be getting better. Eventually I was having more off days than on and was much more functional. I also started to notice a sense that whenever I would experience the unsteadiness/brain fog etc. I had a slight sense of getting a cold e.g. minor head congestion.

    Around February of 2010, I did get a cold and that did seem to bring a return of the symptoms for a couple weeks.

    Then about two months ago, I was on my hands and knees looking under the car to see if it was leaking, and that position seem to instantly bring on the unsteadiness, followed hours later with intense lethargy. And I've basically been dealing --- to varying degrees -- with the symptoms ever since. I did, however, do a lot more research into labyrinthitis on the Web, and came across dozens of message boards and websites with people who seem to have many if not all of my symptoms. And their diagnosis was largely that of labyrinthitis (or related issues --- Meneire's etc)

    At some point in the past month and a half I had an appointment with an ear nose and throat doctor and brought up my theory of labyrinthitis. He stated that labyrinthitis should not recur, and that doesn't really jibe with plenty of testimonies that I've read, so, frankly, I've written him off.

    My sense is that I need to find a doctor who has experience, preferably extensive experience, with these kinds of issues. The problem seems rare enough that such doctors are hard to find. I'm hoping someone here can recommend one, or share ideas as to track one down. It seems one common element of these kind of problems are lack of diagnosis or misdiagnosis.

    In closing, I have to state something I've seen many people say here, that these boards are a lifesaver in that they let you know you are not alone. Up until three or four months ago, it seemed like I was the only person who'd ever experience these symptoms.

    Thanks!

    W

    Last edited by wil24; 04-28-2010 at 06:28 PM. Reason: added detail

     
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    Old 04-28-2010, 07:34 PM   #2
    alborde
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    Re: Doctor experienced with labyrinthitis/vestibular system issues in San Diego area?

    It sounds like you have seen a neurologist and an ENT.

    Have you seen a neurolotogist?
    This is the type of doctor that specializes in inner ear disorders.
    I don't think anyone can link you to the website of any particular doctor in San Diego w/out violating the posting policies of this board.
    One place to look might be the vestibular disorders association.
    They are a non-profit awareness and advocacy group that also maintains
    a list of doctors...

    Hang in there.

     
    Old 04-29-2010, 02:16 PM   #3
    wil24
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    Re: Doctor experienced with labyrinthitis/vestibular system issues in San Diego area?

    Weird - before reading your reply I was reading about neurotologists and thinking I should see one. Sounds like good advice. Thanks!

     
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