MenieresInfo.com Blog

Patient Hank Akins struggles with Medi-Cal (which is what Medicaid is called in California) to get a diagnosis.  But he finds that he is an “inconvenient patient,” rather than a valued member of our society.

 Link:  An Inconvenient Patient

Adding to the many difficulties endured by those with Meniere’s Disease is the problem of people not believing us because we don’t “look” disabled. Oftentimes they say just that: “You don’t look disabled.” Translated: “Hell, you don’t look disabled to me, you lazy, faking, no-good, bloodsucking, thief-of-my-tax-money!” Read about this phenomenon in this article written by Hank Atkins, who suffers from frequent random attacks of vertigo and who is struggling with diagnosis and disability issues.

How do doctors think?  Don’t we wish we knew?  There may be help at hand!

Dr. Jerome Groopman’s new book, “How Doctors Think,” describes how doctors hit — and miss — the correct diagnosis, and includes Groopman’s own errors!  (Bless any doctor who can admit error!)

The New York Times book review of “How Doctors Think,” by Michael Crichton, M.D., can be found here.

To Google more information, click here.

As almost all Meniere’s Disease patients know, just getting the correct diagnosis can be an excruciatingly traumatic process.  Many of us are told that we are “just plain nuts” until we finally find the right doctor with the right knowledge, the right diagnostic equipment, and the right analysis who can finally come to a reasonable conclusion.  More than half of our problem is just getting a doctor to listen to us for more than one sentence.

And diagnosis is just the beginning!  Then comes the search for the treatment, or combination of treatments, that works best for each of us individually.  Many of our doctors are just not knowledgeable about possible treatments.

This book has gotten many rave reviews.  To the extent that it can help us understand those whom we need to understand us, the price will be well worth paying.

[Updated March 3, 2007]
[Revised February 24, 2007]
[Revised February 17, 2007]

Question

For almost twenty years, I have had all the symptoms of Meniere’s Disease, including “brain fog.”  All the while, my doctors said my tests were fine and so I must be fine, and that my symptoms must be manifestations of stress.  (Or else I was just plain nuts.)

Finally, the symptoms got so bad that I could not do my job and I went back to the doctor and was told that I “may” have Meniere’s Disease. He said there was nothing he could do, and I should see some other doctor.  Without a job, my only health care resource was Medi-Cal, which is what Medicaid is called in California.  However, it was almost impossible to find another doctor in my area who accepted Medi-Cal’s low payments.  It took a lot of work to eventually find one more doctor in my area who would take Medi-Cal.  He prescribed meclizine hydrochloride (Antivert), in case I had Meniere’s Disease, but the Antivert was not helpful to me.  I’ve had more tests done, including X-rays, blood tests, etc.  I had an MRI scan, but it turned out to be wrong because it was not conducted with “contrast.”  I waited a long time to be rescheduled for an MRI scan with contrast.  I later found out that Medi-Cal twice turned down the second MRI scan, but my doctor “forgot” to tell me.  Then I applied for a third time, and I was just recently turned down for a third time.  Each request for approval of an MRI somehow takes Medi-Cal four months to process (and reject).

It’s now been two years since I went back to the doctor, and I have gotten nowhere. My doctor told me, “You are a Medi-Cal patient. I make thirteen cents on the dollar to see you. You are just not a priority when you are getting treatment under Medi-Cal.” 

I have been denied disability benefits twice, due to not being “disabled enough to prevent me from doing my former occupation,” regardless of the fact that my symptoms are now constant and are keeping me from getting any kind of job.  My Medi-Cal disability physical examination lasted about four minutes and was so brief that I was not at all surprised to hear that the doctor judged me to be in “good health.” I have been told that the only way to get state disability insurance approved is to hire a lawyer. A lawyer told me that I need to have a doctor sign a form saying I am disabled.  However, even with the history above, it seems that no doctor who accepts Medi-Cal is brave enough to actually put in writing to Medi-Cal what the doctor tells me in person. Without a doctor willing to sign this form, I will eventually lose my home and all I own. Not to mention that I still do not know what is wrong with me, since Meniere’s Disease is still only a speculation.

Do you have any ideas?

Answer

Health care in the U.S. leaves a lot to be desired.  It can be good for those who are well-insured and who have a visible and measurable disorder, like a tumor or even HIV.  It really sucks for both the insured and uninsured who, like us, have invisible illnesses.  Invisible illnesses always bring out the worst in bosses, friends, relatives, and doctors, who suspect us of being shirkers or of being “just plain nuts.”

It can be very difficult for anyone to find a local doctor who knows anything about Meniere’s Disease, let alone a local doctor who knows anything about Meniere’s Disease AND who accepts Medicaid (or, as in your case, living in California, Medi-Cal).  Patients often attach undue importance to the proximity of a doctor.  Our perspective is that proximity alone should not be a factor.  Of course, money is always a factor and that translates into proximity, but that is a different issue.  Even without the Medicaid/Medi-Cal problem, it may be necessary for some patients to travel, even out of state, to get a proper diagnosis and treatment plan. A local doctor can then oversee the treatment plan.  (Click here.)

It is hard to sort out our feelings about the doctors you have seen.  On one hand, candor is a virtue.  On the other hand, so is compassion.  It is tempting to say that a doctor who expresses the 13 cents on the dollar crap and who tells you that you are just not a priority simply shouldn’t be taking Medi-Cal patients.  On the other hand, thank goodness that the doctor does take Medi-Cal patients.  We think that doctors should be able to recoup lost wages, tuition, and expenses while they attended college and medical school.  We are fine with doctors who choose to become wealthy in our democratic capitalist society.  We would just hope that some doctors are actually motivated to help people, even people who are constrained by Medi-Cal and Medicaid, and can actually respect poor patients as well as rich patients.

Your logic seems to be:  (1) You have not been diagnosed.  (2) Since you have not been diagnosed, you have not been treated for a diagnosed disorder or condition.  (3) You have been prescribed one form of treatment for Meniere’s Disease, Antivert, which was not helpful.  (4) You are unable to get the treatment that you deserve because of the failings of Medi-Cal.  (5) You have become disabled due to your symptoms (which may or may not be Meniere’s Disease), which are untreated because you are unable to get treatment through Medi-Cal.  (6) You believe that the only choice you have left is to draw disability benefits (although you would rather be treated and working as you were before your symptoms overwhelmed you), and you are looking for a doctor who will risk the wrath of Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below) by truthfully reporting in writing your disability.  In short, you have given up all hope of getting the diagnosis and treatment that you need and that you deserve, all because of the failings of Medi-Cal.  All of this is quite understandable.

However, our logic runs this way:  (1) You have not been diagnosed.  (2) You may or may not have Meniere’s disease.  (3) You need a diagnosis.  (4)  If you have something that is not Meniere’s Disease, you need to be treated for that disorder or condition and become able to return to your former occupation or some other occupation, if possible.  (5) If you have Meniere’s Disease, although Meniere’s Disease is incurable, there are MANY possible treatments for Meniere’s Disease, of which you have experienced but one.  (6) If you have Meniere’s Disease, you need to experience, through (unfortunately) trial and error, the various treatments to see which treatment, or combination of treatments, may work best for you and return you to your former occupation or some other occupation, if possible.  (7) If you have Meniere’s Disease and it turns out to be intractable (untreatable) and you remain disabled, then you need to have a specialized doctor who is well-acquainted with Meniere’s Disease who can substantiate your disability without fear of reprisal from Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below).  (8) In order to accomplish all of this, you must first somehow find a way to get the treatment that you deserve under Medi-Cal, including the MRI scan with contrast that is necessary to further a differential diagnosis of your symptoms.  In short, we encourage you to persist in finding a way, even an imperfect way, of getting the diagnosis that you deserve and the treatment that you deserve.  Easy for us to say, we know.  You have been down many dead end roads and you have earned the right to be discouraged.  That said, we who are not doctors and we who are no smarter than you still want to try to figure out a way for you to succeed.  Please forgive us.
 
Many disorders and conditions can produce the symptoms you describe.  (Click here.)  As you no doubt already know, you need a “differential diagnosis” to determine which one of the many disorders and conditions is the reason for YOUR symptoms.  (Click here.)  There is no test for Meniere’s Disease.  Meniere’s Disease is diagnosed based upon a patient’s history and diagnostic tests for all other possible disorders and conditions, and if nothing else is determined to be the cause of your symptoms, then Meniere’s Disease is the usual diagnosis.  An MRI scan of the brain is necessary to test for and either establish or rule out some of these disorders and conditions; for example, acoustic neuroma and multiple sclerosis.  Without a proper MRI scan, you are essentially undiagnosed.  Therefore, a proper MRI scan is absolutely necessary for a diagnosis of Meniere’s Disease (or to diagnose a mimic).
 
A diagnosis of Meniere’s Disease — or of any other disorder or condition that might produce the same symptoms — is tricky and should be conducted by a doctor who is very familiar with these symptoms and with the differential diagnosis of these symptoms.  That could be a diagnostician (like television’s Dr. House) or, more likely, it could be a neurotologist (also called an otoneurologist).  One might hope that a neurotologist has experience with justifying an MRI scan to Medi-Cal.  (Click here.)
 
So, your obvious next question is how do you find a neurotologist (not necessarily “local”) who accepts Medi-Cal?  Our simple answer is that we have no experience and no knowledge of this task.  You no doubt know far more about this than we do, and you no doubt have tried everything that we are about to suggest.  But that won’t stop us from trotting out whatever we can think of.

Perhaps you can go to a county hospital, public hospital medical center, or a university medical center, whether or not close to where you live, which, one would hope, would accept Medi-Cal.

For example (we will pick Southern California for this example):

• Loma Linda University Medical Center.  Some years ago, we heard of a  Meniere’s Disease patient on Medi-Cal who had a vestibular neurectomy at Loma Linda, complete with neurotologist and neurosurgeon.  (Note that “heard of” is not very reliable.)  Update:  A reader tells us that Loma Linda Medical Center does not accept Medi-Cal.
• Update:  A reader suggests that one should ask whether Arrowhead Regional Medical Center in Colton, Cal., accepts Medi-Cal.
• Update:  We suggest finding out whether Los Angeles County — University of Southern Californa (County-USC) Medical Center accepts Medi-Cal.
• University of California, Los Angeles, Medical Center.
• University of California, San Diego, Medical Center. The head neurotologist there actually did write the book.  (Click here.)

Or perhaps there is a major private clinic that is worth asking if it would accept Medi-Cal. 

For example (once again, we will pick Southern California for this example):

• House Ear Clinic, Los Angeles

With good fortune, you will be diagnosed and treated for whatever is causing your symptoms.  Meniere’s Disease is incurable but the symptoms are treatable, at least to a certain extent, in most (but not all) cases.  There are many possible treatments, and one must, through trial and error, figure out which treatment(s) works the best for that particular patient.  (Click here.)

After you are diagnosed and treated, and if you unfortunately remain disabled whether from Meniere’s Disease or from some other disorder or condition,  it is (as you know) yet another uphill battle to secure disability benefits.  You mention “state disability insurance,” and “Medi-Cal disability,” but we are sorry to say that we don’t know anything about them.  We have information on two Social Security Administration disability programs:  Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  (Click here.)
 
A lucky few Meniere’s Disease patients succeed in getting an award of SSA disability benefits without a lawyer, but most folks seem to need a lawyer to succeed.  Finding a lawyer sooner is better than later.  The system is designed to exclude claimants, not to qualify them.  A lawyer who represents a claimant before SSA is legally bound by SSA regulations.  Under those regulations, a lawyer may only accept payment out of back benefits actually secured, and there is a maximum limitation on that.  (Click here.)  Yes, this system is fraught with inequities for both claimants and for lawyers, but that’s another issue.  With the right lawyer and the right doctor, a truly disabled claimant shouldn’t have a problem with a doctor’s fortitude in signing a disability form.  What is necessary to qualify for disability benefits are truthfulness and strict compliance with SSA’s particular requirements.  We have extracted SSA’s particular requirements for Meniere’s Disease.  (Click here.)
 
It is a legitimate strategy when one spouse is facing uninsured medical problems for the other spouse to find a different job, even at lower pay (and possibly at higher pay), and even in a different city or different state, that might provide self and spousal insurance benefits that do not exclude preexisting conditions.  Typically, state and federal government jobs provide such benefits.  Another possibility is to join a professional association that offers such health benefits (that is, obviously, if such an association exists, and if one can qualify).

It is also a legitimate strategy to move from an area without facilities for treating Meniere’s Disease to an area that has facilities for the treatment of Meniere’s Disease, even though this might require a change of jobs for one and/or for one’s spouse and the attendant trauma for one’s children.  But you get the idea, which is basically thinking outside of the so-called “box.”  Is changing jobs painful?  Sure.  Is moving out of state painful?  Sure.  Is selling one’s house painful?  Sure.  Is the alternative any better?  If it is, then fine.  If it’s not, then there is no end of pain that some of us must endure in order to prevail in the battle against Meniere’s Disease.
 
It’s clear that you have been through the proverbial mill, and that nothing so far has been easy.  It may not get any easier, but that cannot stop you from fighting the good fight.  You are smart and determined and we are sure that there is success in store for you, although we cannot predict when or at what cost.  We hope that when you succeed, you will share with us the benefit of your knowledge so that we can publish it in hopes of helping others who will follow behind you.

We wish you well.

A reader asks:

How likely is it that someone could be diagnosed with both Benign Paroxysmal Positional Vertigo (BPPV) and Meniere’s Disease?

Actually, the question that our reader poses is somewhat different from the title of this post, which we worded.  But let’s start with the title.  We haven’t seen any authoritative studies on the subject, but you can look for yourself at PubMed here.  The physiology of Benign Paroxysmal Positional Vertigo (BPPV) is dislodged calcium carbonate crystals in the inner ear.  This is quite different from the physiology at work in Meniere’s Disease (or, at least the prevailing, but not universally held, theory of the physiology at work in Meniere’s Disease), which is excess endolymphatic fluid due to either overproduction or underresorption.  See the MenieresInfo.com Cause Page.  We don’t see a connection.  Surely, though, it is possible that one can develop both Meniere’s Disease and any other medical disorder.

But that’s not our reader’s question.  Our reader asks how likely that one would be diagnosed with both BPPV and Meniere’s Disease, and our reader asks that without regard to whether one actually has both BPPV and Meniere’s Disease.  BPPV is easier to diagnose than Meniere’s Disease.  We know that Meniere’s Disease is difficult to diagnose, because there is no definitive test for Meniere’s Disease, and in some cases, it is just the default diagnosis when no other cause for one’s symptoms can be identified.  BPPV can certainly “mimic” Meniere’s Disease.  See the MenieresInfo.com Diagnosis Page.  We wouldn’t fault a doctor for a “what the heck” try at relieving one’s symptoms through the positional maneuvers that are so successful at treating BPPV.  If that is done, and the patient improves somewhat, it would be tempting to add BPPV to the diagnosis.

But what our reader is actually doing is evincing skepticism over a diagnosis of both BPPV and Meniere’s Disease.  We always recommend multiple medical opinions, both for diagnosis and for treatment options.  See the MenieresInfo.com Doctors Page.

Via our free subscription to PubMed alerts, we were notified today that the following articles have been added to PubMed.  For tips on how to obtain the full text of these articles, see the MenieresInfo.com Research Page.

• Differentiation of Meniere’s disease and migraine-associated dizziness: a review.
• Electrocochleography in the evaluation of patients with Meniere’s disease/endolymphatic hydrops.
• An update on the surgical treatment of Meniere’s diseases.
• Evaluating treatments for Meniere’s disease: controversies surrounding placebo control.
• Meniere’s disease review 2005.
• Problems and solutions for fitting amplification to patients with Meniere’s disease.
• P-100 in the treatment of Meniere’s disease: a clinical study.
• Meniere’s disease: prevalence of contralateral ear involvement.

A reader asks:

My doctor recommends endolymphatic sac surgery of some sort on one of my ears.  How can he or I tell which ear is causing the problem?

You should discuss this with your doctor and ask how the doctor determined which ear to operate on.  One might expect that ear to be the one that has hearing loss, aural fullness, and tinnitus.

A reader asks:

My dad has vertigo for a few seconds whenever he moves his head or gets up out of bed or turns over in bed.  When he stays still, his vertigo stops. He’s 73, and hears well.  My uncle, who is a doctor who specializes in liver disease, diagnosed my father’s illness as Meniere’s Disease over the telephone, and told him to take several Chinese herbs every day. After four days, there is no improvement.  Now my dad stays in bed all day.  Can you give me any advice?

Yes.  We suggest that your father go see a doctor and get a proper medical diagnosis and treatment for his condition, whatever it may be.

After giving a run-down on history and symptoms, a patients asks:

What is your opinion on this particular case — does this sound like a serious problem or an issue that you can find a solution for?

We are patients, not doctors.  You need to be seeing doctors for diagnostic tests and diagnosis of your condition, not asking your question on the Internet.

For more information on the diagnosis of Meniere’s Disease, visit the MenieresInfo.com Diagnosis Page.  For information on finding a doctor, visit the MenieresInfo.com Doctors Page.

A reader asks:

I was diagnosed with cochlear hydrops.  I think my condition would be called “rotational” as it comes and goes.  When my problems worsen, the eye and the nasal passage on the affected side are usually congested, and I can feel pressure down the side of my neck and in the occipital bone.  How are these symptoms connected?

We have no idea.  You need to discuss this with your doctor.  We always recommend multiple medical opinions, both for diagnosis and for treatment options.

“Rotational” is a term that, when applied to Meniere’s Disease, refers to “rotational vertigo,” a specific form of dizziness.  Symptoms that come and go are said to be “episodic.”  Symptoms that change in intensity are said to be “fluctuating.”

A reader asks:

I am being treated for Meniere’s Disease. My doctor states that I am suffering from episodic vertigo of uncertain etiology. I don’t suffer from “vertigo.” I just have dizzy spells that make me feel like I’m “cross-eyed.” After a spell I have a bad headache and sometimes an upset stomach, but I don’t have hearing loss, tinnitus, or aural fullness. I have had very extensive testing by three different doctors from three different groups.  Does this make sense?

Sometimes doctors will diagnose Meniere’s Disease when extensive testing yields no other diagnosis, even when the symptoms don’t quite match Meniere’s Disease.  This can mean that the doctors just don’t know.  You should discuss your concerns with your doctor.  In any event, you lack confidence in your diagnosis, and we understand.  We suggest you get even more medical opinions until you are satisfied with your diagnosis.  This can take ten or even more opinions.  You might try doctors with different specialties or go to a large private or university multidisciplinary clinic.

A reader asks:

Can Meniere’s Disease be diagnosed when the only symptom is episodic dizziness?

The most commonly-used definition of Meniere’s Disease is published by the American Academy of Otolaryngology-Head and Neck Surgery  (click here).  This definition contemplates vertigo and hearing loss and either aural fullness or tinnitis or both.  But this is only one definition out of many, and your doctor may have one’s own definition.

You say, “episodic dizziness,” but the “dizziness” experienced by Meniere’s Disease patients is a specific form called “rotational vertigo.”

Practically speaking, a doctor who diagnoses Meniere’s Disease solely on the basis of episodic rotational vertigo is probably saying that one doesn’t know what the problem is, so one may call it “Meniere’s Disease” until there is more information available (such as diagnostic test results).

There is more information about the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.

A reader asks: 

Do my symptoms sound like Meniere’s Disease?  [This reader provided a lengthly description of the symptoms.]  I was seen by two ear, nose, and throat doctors, and by a neurologist.  Nothing was found to be wrong with me.  What do you think?

We think that you are asking us whether you have Meniere’s Disease.  We are patients, not doctors, so our answer to this question will always be, “We don’t know.”  You can find the symptoms of Meniere’s Disease at the MenieresInfo.com Start Page and at the MeniereInfo.com Symptoms Page.  But keep in mind that the symptoms of Meniere’s Disease can be the same symptoms as many other disorders (see the MeniereInfo.com sections on mimics).  So, even if you had the symptoms of Meniere’s Disease, you would also have the symptoms of many other disorders.  Doctors perform a “differential diagnosis” to figure out what is causing those symptoms.  See the MenieresInfo.com Diagnosis Page.

But what you are really saying is that you are not satisfied with your doctors.  So what you really need to do is to get more medical opinions until you are satisfied.  Many of us go to as many as ten (or even more) doctors before we get one that seems to know something.  We always recommend multiple medical opinions for both diagnosis and treatment options.  See the MenieresInfo.com Doctors Page.

A reader asks:

My father’s doctor suspects that my father may have Meniere’s Disease. His symptoms began to appear shortly after he recovered from a severe infection of Rocky Mountain Spotted Fever (RMSF). The diagnosis of RMSF came after he had been ill for quite some time due to the fact that he didn’t develop the characteristic rash. I found some connections between Lyme disease and Meniere’s Disease on the web, but couldn’t find any cases where Meniere’s Disease was associated with RMSF. Could Meniere’s Disease have been caused or “triggered” by the RMSF?

Meniere’s Disease is “idiopathic” — the cause is unknown.  Nothing in the world is known to cause Meniere’s Disease.  See the MenieresInfo.com Cause Page.  We know of no “connection” between Lyme Disease and Meniere’s Disease.  Click here to search PubMed for “Meniere’s” and “Lyme.”  Lyme Disease and Meniere’s Disease can have the same or similar symptoms — along with bunches of other disorders, which is why the symptoms of Meniere’s Disease (which are also the symptoms of all those other disorders) require a “differential diagnosis” to figure out what is the cause of the symptoms.  See the MenieresInfo.com Diagnosis Page.  We know of no connection between RMSF and Meniere’s Disease.  Click here to search PubMed for “Meniere’s” and “rocky” (there are no hits).  Meniere’s Disease always follows something in life, but that doesn’t mean that the “something in life” caused it.  See the MenieresInfo.com section on the “post hoc ergo proper hoc” fallacy.

We always recommend multiple medical opinions, both for diagnosis and for treatment options.

A reader asks:

I’ve been wrestling with Meniere’s Disease for four years.  I’ve had multiple MRI scans, a CT scan, many blood tests, and a battery of vestibular testing.  I’ve tried many non-invasive treatments, including the Meniett Device.  My ENT is one of the best in the area, and he contends that while I have Meniere’s Disease, there may be “something else going on.”  My gut instinct tells me that I do not have Meniere’s Disease.  I often get terrible headaches, fevers, constant post-nasal discharge on the affected side, and around the time this all started my tonsils swelled to twice their size.  Have you ever heard of these sorts of things associated with Meniere’s?  My ENT feels that the next logical choice for me are intratympanic injections of gentamicin, but I’m reluctant to undergo something so irreversible until all other options have been exhausted. On the other hand, I’m so worn down by this disease that I’m wondering if the ”gent” injections are the lesser evil, or if I should push for more testing.  It all comes back to the symptoms — I haven’t found any accounts online of anyone else with the same issues - have you?

1.  You say that you’ve tried many non-invasive treatments, including the Meniett Device, but that there other options that are not irreversible as are treatments of intratympanic gentamicin, that you are reluctant to undergo the irreversible treatment (and, we think, you mean “risky” treatment) of gentamicin.  You’ve answered your own question.  You are saying that you want to try the remaining untried less-invasive treatments before moving on to more-invasive treatments.  So talk to your doctor about the reasoning behind the recommendation of intratympanic gentamicin over the remaining untried, less-invasive, treatments and then make your own choice.  (It makes sense to us to try less-invasive treatments before more-invasive treatments.  However, some patients are so desperate for treatment that they may choose to skip to more-invasive, more-risky treatments in the hope of earlier resolution of their vertigo.  That makes sense to us, too.)  For more information on treatment, visit the MenieresInfo.com Treatment Page.

2.  You essentially say that your ear, nose, and throat (ENT) doctor is “one of the best in the area.”  How in the world would you know this?  If you did know this, wouldn’t you go to THE best in the area?  Is “one of the best” ENT doctors equivalent to “one of the best” neuro-otologists?  “One of the best” Meniere’s Disease specialists?  We are always puzzled by claims of “the best” or “one of the best” when it comes to doctors.  Most patients have no idea what that means or how to logically come to such a conclusion.  But what you are really saying at the bottom line is that you do not trust your diagnosis.  We understand.  That is why we PREACH ad nauseum to get multiple medical opinions, both for diagnosis AND for treatment options.  See the MenieresInfo.com Doctors Page.

3.  You believe that your symptoms don’t match the symptoms of Meniere’s Disease.  There are four “classic” symptoms of Meniere’s Disease, and all four are fluctuating, episodic, and progressive:  rotational vertigo (as opposed to “dizziness”), hearing loss, tinnitus, and aural fullness (a sense of pressure when there is no pressure).  See the MenieresInfo.com Symptoms Page.  However, there are many disorders that have these same symptoms.  A patient with these symptoms has to undergo a “differential diagnosis” to figure out which disorder is causing the symptoms.  A patient has to be tested for all disorders that may be at fault.  There is no test for Meniere’s Disease.  Therefore, when all tests for all other possible disorders are negative, a patient is said to have “Meniere’s Disease.”  See the MenieresInfo.com Diagnosis Page.  You have mentioned some, but not all, of the tests that are a part of a “differential diagnosis” of the “classic four” symptoms.  Of course, a patient can have two or more disorders at the same time.  The mere fact that a patient has more symptoms than the “classic four” of Meniere’s Disease may mean that a patient has something in addition to Meniere’s Disease.  (Or not.)  The key to resolving your belief, however, is additional medical opinions.

A reader gives a detailed account of one’s symptoms and one’s ENT’s opinion, which concluded that “it sounds like Meniere’s.”  The ENT “suggested” a low salt diet for three months.  The reader asks:

I realize you do not give medical advice as far as diagnosis, but given the information, do you suggest a second opinion?

This reader does not have confidence in one’s doctor and wonders whether to get another medical opinion.  Our answer is always “yes,” both for diagnosis and for treatment options.  Our answer is “yes,” even when the patient is delighted with one’s doctor and with the doctor’s diagnosis and with the doctor’s prescribed treatment.  See the MenieresInfo.com Doctors Page.

The symptoms of Meniere’s Disease are also the symptoms of many other diseases.  It is very tricky to conduct a “differential diagnosis” to figure out which of the many possible disorders is to be blamed for the symptoms.  When nothing else can be blamed, the diagnosis becomes “Meniere’s Disease.”  Essentially, a diagnosis of Meniere’s Disease means “we couldn’t find anything else to blame, so it must be Meniere’s Disease.”  We’d convert “must” to “might,” since the diagnosis is not based on any definitive test for Meniere’s Disease.  (There is no definitive test for Meniere’s Disease.)  Read more about the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.

Most people spend more time and money on the purchase of a new car than they spend on getting diagnosed for the symptoms of Meniere’s Disease (or anything else).  We think one’s health is more important than the purchase of a new car.

A reader asks:

My neurologist diagnosed me with “probable” Meniere’s Disease three years ago based upon a severe attack of ataxia that lasted for three weeks.  At that time, MRI scans were taken with and without contrast and no lesion was seen.  Recently, I have just fallen — twice — for no apparent reason.  I broke my ankle the second time.  My question is, how does one work with Meniere’s Disease?  I plan to go back to work soon.  I have not spoken with my neurologist about this.

Ataxia is defined as the inability to coordinate muscle movements.  Read about the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.  As you can see there, a diagnosis of Meniere’s Disease involves a “differential diagnosis,” and diagnostic tests.  Most doctors use the AAO-HNS criteria to define Meniere’s Disease, and what you have described that happened three years ago and what you have described that happened recently do not fit that criteria.  Furthermore, we are puzzled as to what a diagnosis of “probable” Meniere’s Disease might mean.

It’s not clear to us that your recent falls are due to the same condition that brought on your ataxia three years ago.

Obviously (to us, at least), you need to get diagnosed by someone — either your neurologist or some other doctor.  We always recommend multiple medical opinions, both for diagnosis and for treatment options.

If you have Meniere’s Disease, the way that you work, in simple terms, is to (1) get treatment for the Meniere’s Disease and (2) if you become disabled, request reasonable accommodations for the disability.

See the MenieresInfo.com Treatment Page and the MenieresInfo.com Disability Page.

A reader asks:

I have had severe dizzness for about six weeks and now I have fullness and tinnitus, too.  My doctor has prescribed antibiotics and tests for seizures and heart trouble.  I think she is looking in the wrong place.  Can you give me any help?

No.  We are not doctors.  You need to be diagnosed by a doctor.  You should share your belief that she is looking in the wrong place with your doctor, and discuss your concerns with her.  If you lack confidence in your doctor, then we recommend that you find a different doctor.  Of course, we always recommend multiple medical opinions, both for diagnosis and for treatment options.

Perhaps you think you have Meniere’s Disease.  That would probably be a misplaced thought, because the symptoms of Meniere’s Disease, including the symptoms of “dizziness,” fullness, and tinnitus, are the symptoms of many diseases.  Doctors have to perform a “differential diagnosis” to figure out which of the many possible disorders are causing any one patient’s symptoms.  “Dizziness” is a non-specific description of a symptom, and could mean a lot of things.  The dizziness that one experiences with Meniere’s Disease is a specific form of dizziness — rotational vertigo.  If one is dizzy, but one does not experience rotational vertigo, then doctors may well look in another direction.

There is more information on the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.

A reader asks:

I have had tinnitus for 2 weeks. My hearing is very good in my right ear but the problem remains in my left. I have a low frequency roar/hum and therefore cannot hear lower frequencies well with my left ear. What lower frequencies I do manage to hear sound a pitch lower than in my right ear. I have not suffered any vertigo or unbalance yet. Also, when tilting my head side to side, the noise disappears for a brief moment.  Do you have any comments or suggestions?

What you are really asking is for us to guess at what is causing your tinnitus.  This we cannot do, for we are not doctors.  Our suggestion is *always* to seek a diagnosis from a licensed medical professional.

If you want to learn more about tinnitus, we suggest that you visit the following websites:

• American Tinnitus Association
• American Academy of Otolaryngology — Head and Neck Surgery
• U.S. National Institutes of Health
• Dr. Stephen Nagler
• Recent Medical Journal Article

Updated January 17, 2006
Originally posted January 16, 2006

A reader asks:

What is the relationship of microvascular compression syndrome (MCS) to Meniere’s Disease?

Microvascular compression syndrome (MCS) (also called vascular compression and neurovascular compression) occurs when a blood vessel is situated so close to a nerve that it contacts and presses upon a nerve.

Under various theories, MCS is either:

In any event, MCS can cause the same symptoms as Meniere’s Disease. It is treated by surgery, called “microvascular decompression” (MVD), in which the offending blood vessel is moved off of the nerve. A pad may be placed between the blood vessel and the nerve. Update: Some drugs may give symptomatic relief.

Read more about microvascular compression at these links:

MenieresInfo.com Cause Page
MenieresInfo.com Start Page
MenieresInfo.com Diagnosis Page
MenieresInfo.com Treatment Page
Dr. Timothy Hain
PubMed

A reader asks:

I have had rotational vertigo going on two months now and still getting worse. The second doctor that I have gone to thinks that I might have Meniere’s Disease. I have gone through the inner ear tests with no abnormalities and have a CAT scan and MRI scheduled. This doctor has recommended meclizine hydrochloride (Bonine and some other over-the-counter brands) and this greatly helps my nausea, but does nothing for my vertigo. My hearing is perfect, I have no tinnitus, and I have no aural fullness. I see that Menieres is progressive, but can it start with only one of the four “classic” symptoms?

This reader has one symptom: persistent, progressive, rotational vertigo. Although there are many definitions of Meniere’s Disease, the most commonly-used definition of “classic” Meniere’s Disease may be found here, which, generally, contemplates four fluctuating symptoms: rotational vertigo, hearing loss, aural fullness, and tinnitus. One of the reader’s doctors has remarked that the reader “might” have Meniere’s Disease.

We speculate that the reader (1) is desperately looking for a diagnosis, even Meniere’s Disease, and (2) is worried that it might be Meniere’s Disease.

As always, we recommend that our reader take one’s concerns to one’s doctor and discuss them. Often a patient’s concerns arise upon reflection and research after one has left the doctor’s office, and one needs to return to the doctor to discuss one’s concerns. We always recommend multiple medical opinions, both for diagnosis and for treatment options. This reader has seen two doctors so far. Seeing more doctors would not, in our opinion, be unreasonable.

The doctor’s remark that the reader “might” have Meniere’s Disease needs to be evaluated in its full context, to which we are not privy. Sometimes a doctor, faced with an uncertain diagnosis involving rotational vertigo, might say “might” with respect to Meniere’s Disease, since Meniere’s Disease for some doctors is the default diagnostic possibility when a more obvious or conclusive diagnosis is not handy. Sometimes a doctor will just make an offhand remark without intending the serious ramifications that a patient might well attach to the remark. In any event, a definitive diagnosis of Meniere’s Disease can only be accomplished by ruling out all other possible disorders having the same or similar symptoms — of which there are many. See the MenieresInfo.com Diagnosis Page, and the section on mimics.

There is no “typical” way that Meniere’s Disease begins. Each patient has one’s own story to tell. See our previous answer to a similar question here. For some of us with Meniere’s Disease, an initial acute attack is marked by all the symptoms. Others of us experience one or two symptoms first, and the other symptoms later. There is just no “typical” pattern, or at least no typical pattern that we have discerned or read about.

Vertigo alone, and vertigo in conjunction with the other symptoms of Meniere’s Disease and a whole lot of other disorders, can be difficult to diagnose. One must be patient while doctors go through the process of differential diagnosis to confirm or eliminate possibilities. With the one symptom of vertigo, there are many, many, many possible disorders about which to worry — Meniere’s Disease being just one of them. We suggest not worrying about any one possibility and instead focusing on getting the diagnostic tests that may help to further the differential diagnosis. (Once again, see the MenieresInfo.com Diagnosis Page.)

It is interesting that our reader is scheduled for both a CT scan and an MRI scan. Perhaps it would be too presumptuous of us to think that both scans are targeted toward the reader’s head. The usual (but not exclusive) choice would be an MRI scan, for the purpose of looking for, among other possible abnormalities, acoustic neuroma (benign tumor on the 8th cranial nerve), or plaque on the brain (which might suggest Multiple Sclerosis).

It is also interesting that our reader reports that meclizine hydrochloride helps one’s nausea but not one’s vertigo. It has yet to be determined that this reader actually has Meniere’s Disease. However, we should note that nausea is not a symptom of Meniere’s Disease. Nausea can often be a consequence of the Meniere’s Disease symptom of vertigo. Without vertigo, Meniere’s Disease patients are not expected to experience nausea. Meclizine hydrochloride is intended to treat vertigo by sedating the vestibular system rather than treat the secondary symptom of nausea, which in Meniere’s Disease patients is often treated with phenergan or compazine. However, meclizine hydrochloride does have antiemetic properties. See Dr. Hain’s information here and here.

A reader asks:

I experienced extreme pressure and tinnitus in both ears during a recent cold. I had a fluid buildup in my ears and my Eustachian tubes were blocked. I was a bit dizzy but did not experience rotational vertigo. After several weeks, the Eustachian tubes unblocked and the fluid in my ears was gone. I continue to have slight dizziness that comes and goes, and fullness and tinnitus in both ears. The tinnitus is intense enough to make it hard to sleep. I saw an otolaryngologist today. A hearing test showed no hearing loss. The doctor said I may have Meniere’s Disease, and prescribed a steroid, a diuretic, and a low sodium diet. If it is Meniere’s Disease, then I know that it was caused by the cold. I read up on Meniere’s Disease and it looks pretty scary. I’m hoping that the steroid, diuretic, and low sodium diet will clear this up and that it is not Meniere’s Disease. I have no hearing loss and no vertigo (just the slight dizziness), so could this really be Meniere’s Disease? Could this be early stages of Meniere’s Disease that will get much worse?

Our response to the question “Do I or could I have Meniere’s Disease?” is always the same: we don’t know. Only a medical professional who has conducted the necessary tests and taken the necessary history can diagnose Meniere’s Disease. See the MenieresInfo.com Diagnosis Page.

Our reader seems pretty sure that one is not experiencing rotational vertigo, but, rather, some other form of dizziness such as faintness, loss of balance, weakness, or light-headedness. Still, sorting out the term “dizziness” can be challenging, and it may take diagnostic tests by medical professionals to be definitive.

“Classic” Meniere’s Disease has four fluctuating symptoms: rotational vertigo, aural fullness, hearing loss, and tinnitus. “Atypical” Meniere’s Disease has fluctuating symptoms of both aural fullness and tinnitus, plus the fluctuating symptom of either hearing loss OR rotational vertigo. See the MenieresInfo.com Symptoms Page.

Meniere’s Disease is “idiopathic,” which means “cause unknown.” If you have Meniere’s Disease, you do not know the cause. So far, nothing, including colds and annoying in-laws, is known to be a cause of Meniere’s Disease. See the MenieresInfo.com Cause Page.

Diagnosis of the symptoms of Meniere’s Disease is difficult, because there are many disorders (”mimics”) that have the same symptoms. See the MenieresInfo.com section on mimics.

The only diagnostic test that you describe is a hearing test. It takes quite a bit more testing to establish whether one has Meniere’s Disease. Once again, see the MenieresInfo.com Diagnosis Page.

Meniere’s Disease is progressive. See the MenieresInfo.com Prognosis Page.

If you become deprived of sleep due to tinnitus, you should contact your doctor and discuss prescription options that may help you to get some sleep. This is very important.

We, who are not doctors, cannot tell you one way or the other whether you have, or might have, Meniere’s Disease. Only a medical professional can do that. There are many disorders that can produce the symptoms of Meniere’s Disease. It takes a differential diagnosis and diagnostic testing to sort out such symptoms. We always recommend multiple medical opinions, both for diagnosis and for treatment options.

Updated January 9, 2006.
Originally posted December 17, 2005.

There is yet another mimic of Meniere’s Disease: a true hereditary condition called DFNA9 disorder (or DFNA9 deafness disorder), a gene disorder. It came to our attention today because we received notice that the article entitled “From gene to disease; a progressive cochlear-vestibular dysfunction with onset in middle-age (DFNA9)“ was added to PubMed. The onset of symptoms occurs typically in middle age, and “[i]n about one in three patients severe vestibular symptoms similar to those in Meniere’s disease are present as a result of a progressive impairment of the vestibular system.” For more information on mimics of Meniere’s Disease, visit the Mimics section of the MenieresInfo.com Diagnosis Page. A “mimic” of Meniere’s Disease is a disorder with symptoms similar to Meniere’s Disease. Misdiagnosis among mimics occurs with unknown frequency.

A search at PubMed turns up 11 articles containing the terms DFNA9 and Meniere or Meniere’s.

A study, “Hereditary otovestibular dysfunction and Meniere’s disease in a large Belgian family is caused by a missense mutation in the COCH gene [that is responsible for DFNA9],” of 60 members of a large family with a mutated DFNA9 gene found that nine of them met criteria for “definite” Meniere’s Disease, 13 met criteria for “probable” Meniere’s Disease, and 17 met criteria for “possible” Meniere’s Disease.

This, of course, leads us to wonder whether some patients diagnosed with Meniere’s Disease are actually misdiagnosed and that the true diagnosis is DFNA9 disorder. If so, this may explain why “Meniere’s Disease” has a higher frequency in some families but not others.

Added January 9, 2006:

We quote from this abstract at PubMed:

One [carrier of the DFNA9 trait] developed recurrent episodes of vertigo accompanied by nausea and vomiting, resembling Meniere’s disease. . . . [DFNA9] should be considered as a possible cause in patients developing combined progressive cochlear and vestibular impairment, or suspected hereditary Meniere-like disease, from around middle age.

We quote from this abstract at PubMed:

The COCH gene [that is responsible for DFNA9] may be one of the genetic factors contributing to Meniere’s disease and the possibility of a COCH mutation should be considered in patients with Meniere’s disease symptoms.

We quote from this abstract at PubMed:

In about one in three [DFNA9] patients severe vestibular symptoms similar to those in Meniere’s disease are present as a result of a progressive impairment of the vestibular system.