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.

Click here to read a a GREAT message from GREAT Meniere’s Disease patient Annie Coleman at her website anniecoleman.com.

Here are just some of the many important things to be found in her message, things that make her a GREAT patient:

• She became informed!
• She changed doctors when it made sense.
• She went to a neurotologist (specialty most specific to Meniere’s Disease).
• She approached treatment logically, starting with the least invasive.
• She is aware that improvement following treatment may mean that the treatment is responsible, but considers the possibility of coincidental temporary remission.
• She knows that when one treatment doesn’t improve symptoms, the next treatment may, and that one never knows which treatment may be the charm until one tries it.
• She has determination — she continues to explore ways to improve her symptoms.  She reacts to disappointment not with despair but with progression in treatment options.
• She continues with her life, yet adapting to the demands of her symptoms.  She did the things that she could and adapted to the things that she couldn’t do.
• She is a realist and she is an optimist, proving that these two views can coexist.

We are grateful to Annie for posting this GREAT message, and we wish her well.

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:

I have had Meniere’s Disease since I was a child.  Ten years ago, when the vertigo became so bad that I could not drive, work, or sometimes even walk, I had IT (intratympanic) gentamicin treatments to stop it.  I have not experienced the spinning sensations of dizziness since then. I still feel slightly off balance, but I don’t get that whole world-revolving-around-me feeling any more. However, for the last month it seems like I am having a relapse of Meniere’s Disease, because I have frequent vomiting and upset stomach (but no spinning). My primary care doctor just keeps telling me I have a virus but I have had it since Halloween. I have had many recurring “ear infections” this year and I have been feeling horrible. Should I demand a referral to an otolaryngologist?

First, a reminder: we are patients, not doctors. Now, let’s jump to the bottom line. Every time someone asks, “Should I go to another doctor?” our answer is “yes.” So you ask, “Should I go to another doctor?” and our answer is “yes.” The question arises because the patient is not satisfied and wants to find another doctor with whom the patient will be satisfied. This strikes us as a basic right of a patient — the right to find a doctor with whom one is satisfied. Furthermore, we always recommend multiple medical opinions both for diagnosis and for treatment options — no matter what the symptoms are. Medicine is imprecise and medical opinions are just that — opinions. We recommend that one treat oneself as well as one treats one’s car. We get multiple opinions on our cars, don’t we? See: http://www.menieresinfo.com/doctors.html .

There are many types of dizziness.  The dizziness that is a symptom of Meniere’s Disease is specific and is called ”rotational vertigo” — the sensation that the world is spinning around one. In the absence of rotational vertigo, we could understand why a doctor would be reluctant to deduce Meniere’s Disease. Still, in between episodes of rotational vertigo, many patients experience varying degrees of imbalance. Nausea and vomiting are not symptoms of Meniere’s Disease. Nausea is a consequence of the symptom of rotational vertigo and vomiting is a consequence of nausea. See: http://www.menieresinfo.com/symptoms.html .

We can understand why a doctor would be reluctant to deduce Meniere’s Disease on the basis of nausea and vomiting in the absence of rotational vertigo or, said differently, in the absence of sufficient dizziness to cause the nausea that causes the vomiting. But we can understand why you would suspect Meniere’s Disease in view of your history.

You mention an “otolaryngologist” (an “ENT” (ear, nose, and throat) doctor). The medical specialty most closely associated with the diagnosis and treatment of Meniere’s Disease is a “neurotologist” (also known as an “otoneurologist”) — a doctor who specializes in the diagnosis and treatment of diseases and conditions of the ear, the inner ear, AND of the 8th cranial nerve (the nerve that is involved with the symptoms of Meniere’s Disease). See: http://www.menieresinfo.com/doctors.html.

IT (intratympanic) gentamicin treatment works differently for each patient. Sometimes it works; sometimes it doesn’t. There are many different variations (protocols) of IT gentamicin treatment.  IT gentamicin treatment can have different purposes – for example, to destroy the tiny hairs that are the vestibular function nerve endings of the 8th cranial nerve, or to destroy the “dark cells” (yes, that’s what they’re called) that produce endolymphatic fluid. Some patients find that vertigo is reduced, and some of those patients find those results to be temporary and of varying durations. See: http://www.menieresinfo.com/treatment.html .

We’d put your situation this way. You’ve been sick and puking for nearly a month and your doctor isn’t helping you. Should you see another doctor? Absolutely! You’ve had recurring ear infections over the course of a year and your doctor doesn’t seem to know why or how to stop them. Should you see another doctor? Absolutely! We believe that one cannot go wrong with second/ third/ fourth/ etc. medical opinions.

Please let us know how it turns out. We wish you well.

A patient writes:

I have had several Meniere’s attacks in my life, the most recent being over 10 years ago.  As a result, I had slight hearing loss in my right ear.  In January 2006, I had major surgery, after which I was given an ototoxic “loop” diuretic.  The next day after being given the loop diuretic, I found that I had lost all hearing in my left ear.  After several weeks, much of my hearing in the left ear has returned, but hearing remains distorted and I sometimes have a sensation of fullness.  After testing, my doctor found no evidence of Meniere’s disease in the left ear, but confirmed evidence of Meniere’s Disease in the right ear in the past.  He couldn’t say whether the ototoxic loop diuretic or Meniere’s Disease caused the sudden hearing loss in my left ear.  Can Meniere’s Disease cause sudden hearing loss?  My doctor recommended a low salt diet and avoidance of eating cheese.  I see no reference to cheese on any of the Meniere’s websites. Is it known as a frequent trigger? Should I go to a Meniere’s Disease specialist to better determine if the damage to left ear is from the ototoxic loop diuretic or from Meniere’s? Could this determination make a difference in the prognosis which at this time is to wait to see if it goes away?

Meniere’s Disease can cause sudden hearing loss (SHL) but it doesn’t happen often.  You can research this on Google here.

The logical reason why cheese might not be mentioned on any of the Meniere’s Disease websites is that it is not ”known as a frequent trigger.”  In fact, it isn’t. However, cheese contains sodium, which is at odds with your low salt diet (which is really a low sodium diet).  Sodium is known to be a trigger in some, but not all, patients (click here).  You are really asking, “Why did my doctor tell me to avoid cheese?”  But why ask us?  If you have a question about what you were told by your doctor, our advice is to ask your doctor.  It is simply not possible for us to know why your doctor or anyone else said anything about anything.  Our answer to “Why did he tell me that?” is always “We don’t know.”

Our answer to the question “Should I see another doctor?” is always YES.

“Prognosis” is the course of a disease.  Your “prognosis” is not “wait to see if it goes away.”  That is your “treatment.”  If you are asking whether one doctor might have a different opinion from an other doctor, both for diagnosis and for treatment options, the answer is YES.

What you are really saying through all of this is that you lack confidence in your doctor, to which we always say, “see another doctor.”

A reader writes that his doctors aren’t helping him and asks for our suggestions for treatment.

We are patients, not doctors, so our suggestion is that this reader should keep on seeing doctors until he finds one who inspires his confidence.  There is no getting around this.

A reader asks:

I was wondering — what is the best specialist to see for diagnosis of Meniere’s Disease?

A “neurotologist” (also called ”otoneurologist”) is the medical specialist closest to Meniere’s Disease.  Visit the MenieresInfo.com section on Medical Specialists for more information.  This specialist should be able to perform, or arrange for, a differential diagnosis of the symptoms of Meniere’s Disease.  See the MenieresInfo.com Diagnosis Page.  If the diagnosis is Meniere’s Disease, this is the closest specialist.  If the diagnosis is something else – for example, Lyme Disease, then the neurotologist should be able to refer one to the correct specialist for treatment.

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:

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 asks:

I have Meniere’s Disease. My family doctor does nothing for me. I need help in managing this. I get dizzy when lying flat or turning in bed. My family does not understand how awful this is. Where can I go for help?

When one doctor doesn’t help, go to another doctor. A family doctor is the wrong specialty for Meniere’s Disease. For resources to help you find a doctor, see the MenieresInfo.com Doctors Page. We always recommend multiple medical opinions, both for diagnosis and for treatment options.

We suggest that you read the MenieresInfo.com Start Page.

Note that dizziness arising from certain positions may or may not indicate some disorder other than Meniere’s Disease, such as benign paroxysmal positional vertigo (BPPV). But that’s something to discuss with a specialist.

Lack of understanding among families of Meniere’s Disease patients is all too common — and sad. There are those who don’t understand, those who don’t want to understand, and those who simply cannot understand. The effect on the patient is pretty much the same — devastating.

VEDA (Vestibular Disorders Association, located in the U.S.) has a listing of support groups for patients here.

You might think that you would like to send one’s family to a support group for families of Meniere’s Disease patients, and we would agree with you, but we don’t know of any. Perhaps families should be invited to observe meetings of support groups for patients. We wish we had a better answer for you.

A reader asks:

For a couple of years, I have had all of the symptoms of Meniere’s Disease, plus fever on the left side of the head but focused on the ear. When I recently moved to a city at a higher elevation, my symptoms were more pronounced during the drive. Has there been any research on the effect of atmospheric pressure on the symptoms of Meniere’s Disease?

Virtually all published research can be found at PubMed. You can search PubMed for connections between Meniere’s Disease and atmospheric pressure by clicking here. Virtually all current clinical trials can be found here. Forms of research not falling into these two categories can be difficult to find.

What you describe is a decrease in atmospheric pressure. Anecdotally, some patients have reported that increases in barometric pressure, as from an approaching storm, can trigger or exacerbate their symptoms. Avoiding one’s triggers, or at least, observing one’s triggers, can be an important part of treatment. See the MeniereInfo.com Treatment Page. Also anecdotally, most patients seem able to fly without problems due to pressure changes, and we don’t recall any anecdotal reports that patients have worsened or bettered their symptoms in the long term by simply moving to different elevations. One of the treatments for Meniere’s Disease is the Meniett Device, which introduces pulses of pressure into the middle ear.

All that said, it seems to us that atmospheric pressure, like almost everything else, affects us all differently, and that there have been no certain conclusions reached.

We don’t know what you mean by “fever on the left side of the head but focused on the ear,” but whatever it means, it is not one of the four classic symptoms of Meniere’s Disease. See the MenieresInfo.com Symptoms Page.

We recommend that you proceed with all possible haste to medical professionals for the purpose of finding out what is causing your symptoms and getting treatment. There are resources to help you to find a doctor at the MenieresInfo.com Doctors Page. The symptoms of Meniere’s Disease are also the symptoms of many other disorders. It takes medical professionals and a differential diagnosis to determine what might be the cause of the symptoms that are shared by Meniere’s Disease and other disorders. See the MenieresInfo.com Diagnosis Page.

A reader asks:

How can I find a doctor in Canada who is knowledgeable about Meniere’s Disease?

There are resources to help you find a doctor at the MenieresInfo.com Doctors Page.

Try this search at PubMed.

Patients frequently ask how to find a doctor to treat Meniere’s Disease. The MDIC (Meniere’s Disease Information Center) has a Doctors Page that is devoted to resources to help you find a doctor. Today, the MDIC slightly reorganized that page. There are sections on:

• Medical specialties — descriptions of the various medical specialties that treat Meniere’s Disease.
• A strategy for finding a doctor out of town, even out of state.
• Multiple medical opinions — get them.
• PubMed as a resource to find a doctor — they teach you how to do it.
• Patient advocacy groups — they give you the links.
• Professional medical societies — they give you the links.
• Medical schools — they are sources of both treatment and referral.
• Hospital physician referral services — the answer may be as close as the nearest hospital.
• U.S. doctors, hospitals, and clinics with websites (or other Internet links) that connect them with the treatment of Meniere’s Disease — click on the links.

There is an article in tomorrrow’s (October 30, 2005) New York Times on what is called variously “boutique” or “concierge” medicine. (Some promoters prefer the term “personalized” medicine.) A lot has been written about this emerging business model of health care. Click here to search Google for more information.

It works like this. Most doctors have a client base of perhaps 2,500 clients. The doctor gets paid, more or less, by how many patients are seen. The more patients that can be crammed into an hour, the more the doctor gets paid. Doctors have huge overhead costs, beginning with their medical school loans and lost wages for the time they spent in medical school, office expenses, medical equipment, medical support staff, administrative staff, medical journals, and the time away from patients that it takes to read the medical journals, and all this is just for starters. Even with computers, the amount of time spent by doctors’ offices in insurance billing and disputes is staggering. And then there is the squeeze put on the doctor’s fees by Medicare and by some insurance companies. Medicare reimbursements are, well, paltry, which is why some doctors won’t take Medicare patients. Some insurance plans demand agreements that, in effect, place caps on doctors’ fees for plan patients, if the doctors want to participate with those plans.

The most frequent and fervent complaint that I have heard from Meniere’s Disease patients over years is that their doctors (1) don’t listen to them, and (2) don’t talk to them. I attribute this to a system that penalizes doctors for each minute that they spend with patients. (That’s an observation, not a criticism.) Moreover, I believe that the pressures of time on doctors can lead to misdiagnoses and less than optimal treatment plans. (That’s a criticism, not an observation.)

In the business models known as “boutique” or “concierge” medicine, the time pressure is relieved. Doctors limit the number of patients in their practices, perhaps to 500 or 600. Think of all the time that frees up! But the lost money from fewer patient visits has to come from someplace. That place is what can be called, more or less, a “membership fee.” That fee can be any amount, but most of the reported fees that I have seen run between $1,000 and $2,000 a year. Here’s the math: that averages out to $83-$166 a month. In return, the doctor can see you almost right away, because there are 2000 fewer patients to queue up ahead of you. The doctor can spend more time with you — perhaps even have a cup of coffee with you and chat. That 10 minute visit can become a 60-minute visit.

Under that business model, a doctor with 500 patients paying, say, $1,500 per year each will receive $750,000 per year up front. Of course, you still have your insurance, and your doctor still receives insurance fees on top of that $750,000 — and you still pay your deductibles. (For even higher yearly membership fees, even that can change.) But the pressure on the doctor is relieved. The doctor may even have time enough to research Meniere’s Disease and figure out what it is. (That’s not a mean statement; that is a statement of the reality in many cases.)

Many of us cannot afford to pay that membership fee. Many of us, like many people in America, have no health insurance at all. One thing that has always struck me about Menierians is that we mostly seem to be on the lower rungs of the economic ladder. Or perhaps I only see a skewed sample. In any event, cost is always a factor.

But consider this. Many patients, without thinking much about it, relegate medical expenses to the bottoms of their budgets. They seem constrained by what their insurance will pay. They are reluctant to pay for travel out of town to see a more knowledgeable doctor. They refuse to sacrifice vacations for medical care. They pay for new SUV’s but won’t spend a dime to see a doctor “out of plan.”

Perhaps one strategy would be for a patient to join a boutique plan for a year or two until that patient finds a diagnosis and treatment plan that works, and then leave the boutique for future followup.