I remember an article

[Hope38]

In this article it talked about cyberchondriacs and how people were rushing off to their Drs suspecting MS.  

Is this why the Neuros are so dismissive of us?  I had these problems way before I had internet.

I wish I could remember the article, it was a while back.  But they said MS seems to pull everyone in.

Anyone ever think this is why we are getting the great brush off?

Lisa

[Want to feel well!!!]

Quix, you asked:

Do you feel that their (doctors’) attitude came from within them?  That is, they listen to all?  Or do you think that we can do things that help engender the relationship?

It’s my opinion that it is a little of both; the sensitivity to listen to patients come from within the physician, but I would like to believe most doctors want to help their patients, so I would think a time line and having someone along on the visit helps.  Having another person with you can help reinforce symptoms by giving another point of view.  It helps the doctor get a clearer picture.

I also think if a patient projects that he/she has a chip on his/her shoulder and wants a certain diagnosis, a doctor might produce his/her own chip.  That's why it is so important to be prepared for those important office visits.

      

[3boyzmom]

Totally understand where you are coming from.  I to wonder if things are in my head and if now I'm over analzying previous symptoms.  In retrospect I ignored some thinking it wasn't a big deal and then you start connecting the dots.

However, when you explain things to family/friends who mean well the "I'm sure it is nothing to worry about and you'll be fine.  You are probably worry for nothing" Is what is sending me over the edge.  I wish I had nothing to worry about, and it was a very simple fix but that doesn't appear to be the case.  

So, I think no only do we question ourselves, we question ourselves based on others misguided advice.

I hope you are having a painfree, better day.

[Quixotic1]

I think it serves us well to have the article.  When you read it you know if you recognize yourself or not.  Many of us have wondered if we were indeed going crazy and obsessing about our symptoms.  When something like MS suddenly enters our radar (like for you 2 doctor friends brought it up) and then you come here and hear how varied the presentation can be - you/we all naturally become introspective and examine everything we are going through and everything we have been though (but maybe discounted) trying to see if it fits.  The article affirms for us that we are NOT behaving this way.

Heck, last summer I was sitting in the famous recliner with a right arm that was all but paralyzed wondering if I was imagining it!  Who else has asked here, "Am I going Crazy!?"  at least half, I'd say.

About the new neuro's packet of info.  Fill it out, it is what he uses to formulate his timeline of what is happening to you.  But have your own done also.  It will make you such a better historian for him.  It will give you clearity and credibilty and keep the visit going smoothly.  He may even want a copy.   The timeline is as much for you as it is for the neurologist.  

Wanna,  Zilla, EL18,  were all very glad they had put everything together.  Who else?

Quix

[Nanners123]

Regarding the MRI's Lesions and Symptoms I wanted to post and tell you how informative it was but did not because I almost hate to contaminate with chatter. So I'm glad you brought it up here now I can tell you how great it is to have that information in one spot. What an excellent resource for folks looking for answers.

Thanks so much.

I have a lot of thoughts on the cyberchondriacs but have no energy to write at this time. I love the post, however, and can really relate. All I will say is to echo Hope and say it was not I who brought all this on. Actually I ignored or wrote off several sx over the past several years. I will say that the internet has not allowed me to easily ignore them anymore.

N

[3boyzmom]

I'm new to all this.  Everything for me has come up suddenly, and I don't have a dx yet.  Other than Neurogenic bladder, but that seems to be a huge red flag for Neuro issues since nothing showed on my lower spine.

I think the red flag sent the wheels moving for me.  I don't need referrals from my insurance other than In-patient hospitalization so I am free to see anyone have any tests.  I am seeing the Neuro recommended by my GP and he happens to specialize in Muscular Disorders and MS.  A female had been referred to me by a few friends, but her special area of interest is Migraines and issues of that nature, so I feel my GP has my best interest at heart.

My husband will be going with me to the Neurologist, I've gone to all other appointments by myself.  I'm affraid that I may need some support at the end of this appointment.  Not that I'm going to get a dx, but the possibilities and future tests.

Question, I have rec'd a packet of information to be completed prior to my appointment.  There is an area of reason for seeing the Dr, do I just put Neurogenic bladder?   Secondly there is a page that lists every symptom in the book with headings such as head/neck, lungs, heart, digestion, Urinary Tract, Skin, Reproductive, Eyes, General, Neurological, Musculoskeletal and you circle all you've had within the past year.  Should I still formulate some type of timeline.  My assumption is he'll look through that and may ask when, how long if it sends a red flag.

*****

Regarding the Hypochondriac, I think all computer savy people will use google for anything.  I don't thnk I was trying to self dx myself.  Two Dr's asked me if my Dr was leaning towards MS as it seems the list is fairly short for my situation.  I happened upon this sight when doing a little google after MS was planted in my head and found this site to be very supportive group.

[Quixotic1]

I hate to put in a plug, but last night I consolidated, rewrote and corrected several of the blurbs I've done on "MRI's Lesions and Symptoms."  It's a new post high on this first page.  I was hoping it could become a useful resource for these questions.  I would like to consolidate the MS Diagnosis one, too, once I do the report on "Clinically Isolated Syndrome."

Shameless Plug - OVER

You who have found doctors that listen to you, believe you and who think.  Do you feel that their attitude came from within them?  That is, they listen to all?  Or do you think that we can do things that help engender the relationship?  Things like

Understanding our symptoms in our Timeline

Attending the visits with another person

..................................add yours here.  q

[Quixotic1]

This is a great article!  These people really do exist, though I have found that they usually come to recognize themselves.  I've spent time over on the anxiety forum, and this is exactly how they describe themselves. On that forum the people (regulars) are very good at talking them down and getting them to develop some insight.  

We've had them pass through here. They are very distressed, their anxiety is off the wall, they are highly demanding of attention and every new symptom that gets discussed on the forum by others magically makes it into their evergrowing list of symptoms.  Also, they respond very poorly to reassurance.  The same things get brought up over and over.

Unless it's blatant, I try not to judge, cause you can't really tell online.  But, I think anyone who is symptom surfing, has many symptoms without diagnosis and who is writing a timeline (uh.....all of us?) should read this article periodically to keep us grounded.  

My grandma was one.  It was, "Ralph, Call the doctor!,"  "What should I tell him?"  "Tell him I feel funny."

We had different sorts in pediatrics.  We had parents who had had a close call with a child, usually a baby and then would become hypervigilant.  That was usually something I could do therapy on in the office.  Then we would have Muenchhausens by Proxy.  Those were the scariest people in the world!  Don't let anyone tell you it doesn't exist or that doctors go on Witch Hunts - that whole scenario is real, and I've had the misfortune to see far too many!

But we need to talk about how we distinguish ourselves from the symptom-surfing cyberchondriac.  What is it that can lend credibility to our history to get beyond the growing cynicism?  I do think doctors don't often deal well with patients who are well read on their problems.  If you run into a doctor that cannot abide an assertive patient with a good idea what needs to be done, I'm not sure any of us are going to be able to overcome that.  Lisa's "smoking fanatic" doctor will probably never listen to someone who continues smoking.  When we recognize this we must be prepared to move on.

On the other hand, Sally was right when she advised giving our doctors that are trying a good and fair chance.  If a doc is listening, thinking and trying they deserve their attention from us.  What I consider the proper stepwise procedure, may well not work for a doctor seeing one of you.  The see things and hears things that I might not tumble to.  I, too, need to learn patience.

Someday I'll have to tell you about the mom I "dissed" regarding her continual smoking around her kids.  It was one of the turning points in my career!

Quix

[moeck]

I like the fact that the article points out that
"They really feel the distress they're talking about. It's just that their feelings don't have an obvious medical basis."
Their symptoms are real to them.  My mother-in-law was the opposite.  She had chronic pancreatitis and severe arthritis with osteoporosis. She never followed through with instructions on PT, diet etc, Instead she went from doctor to doctor trying to find one who would tell her she had something that was easy to cure and fix her on the spot.

[Hope38]

My grandmother was a Hypochondriac........she was in the Drs office once a week, this pain or that pain.  You stopped asking her "how are you doing' because then she went off on a tangent!  She died last year at the age of 91!!!!!!!!!  She had osteoporasis, but she died of natural causes, she was old!

I remember seeing a show on Hypochondriacs (  I think Dateline did one awhile ago) these particular people slept on the couch next to the phone so they could call 911.  They would average 3-4 calls a week to 911.   The ambulances would stop going to their houses because they called so much.
They also had blood pressure monitors in there home and a stethescope.  It basically consumed there lives.

I don't see anyone on this board that comes close to that.  You are concerned and do what we can when we feel up to it......but we don't have 911 on speed dial :)

Lisa

[Want to feel well!!!]

I don't know any hypochondriacs either, but I did have a friend with Munchausen syndrome.  At one point she even faked paralysis.  She has a lot of other issues as well, but she was very convincing and a great liar.  Sadly, she is now all alone in her life; everyone has abandoned her due to her “illness.”  I suppose the Internet would be helpful to those with Munchausen syndrome because they could be more accurate with their “symptoms.”

Hypochondrias and Munchausen make it harder for those of us with real complaints!!!

Wanna

[Jazzyfizzle]

I do feel that the internet can add to one's anxiety when reading information. I feel that groups like this though are people that have been ill for an extended time and are not given definite answers. You know when something is not right in your body, you can feel it and are living it daily.
I have never known a real hypoch. so I don't know how they think or feel. Do they have real pain that they can feel in their body? Or things such as the dizziness that are real and the person has to deal with?

Jazzy

[Want to feel well!!!]

Don't give up on finding an answer.  I also have dizziness, but I have not had it as long as you!  Mine has come and gone for 3 years, but this past 6 months it has taken up residence.  

Wanna

[Want to feel well!!!]

What this article makes clear to me is that due to the Internet, doctors are dealing with patients who have self-diagnosed before any tests have been run, and as we know, it isn’t an easy task to diagnose the cause of neurological symptoms.  

In order to keep oneself from being dismissed as a hypochondriac there is fine line a patient must stay behind and let the doctor do his/her job.  I know many of us have been dismissed, myself included, but I think we can usually tell the difference between an a**h** and a good doctor.

Wanna
  

[Hope38]

Yes that was it!!!!!!!!!!  I myself didn't ask for an MRI or suggest MS, the Neuro did.  Plus I went one time to my pcp about my dizziness, he told me to sit on the couch until it goes away and not drive.  That was 6yrs ago.......after 6yrs I wanted an answer.  But still no answer, I just know that a brain tumor and bleeding wasn't found.  Just lesions.

I also think people that never had anxiety before, get it after using the internet.....they think they are looking up harmless symptoms and they get the worst case scenerio.  Heck a cough or cold on here could end up being some devistating disease........the internet shouldn't automatically put out the most rare possibilites, they should just put down the most common sense ones!

Lisa

[Want to feel well!!!]

Is this the article?  (It does make some good points.)

Internet Makes Hypochondria Worse
Cyberchondria

WebMD Feature

Thanks to the Internet, becoming a hypochondriac is much easier than it used to be.

The easy availability of health information on the web has certainly helped countless people make educated decisions about their health and medical treatment, but it can be disastrous for people who are likely to worry. Hypochondriacs researching an illness used to have to scour books and ask doctors for information. Now a universe of information is available with a few mouse clicks.

"For hypochondriacs, the Internet has absolutely changed things for the worse," says Brian Fallon, MD, professor of psychiatry at Columbia University and the co-author of Phantom Illness: Recognizing, Understanding and Overcoming Hypochondria (1996).

So far, no studies have been conducted on just how hypochondriacs use the Internet, Fallon says. But the phenomenon is common enough to have a snappy name -- "cyberchondria."

Understanding Hypochondria

The medical condition called hypochondriasis is defined as worry over an imagined illness with exaggeration of symptoms, no matter how insignificant, that lasts for at least six months and causes significant distress. It tends to develop in the 20s or 30s, and it affects men and women equally. It sometimes comes on following the illness of a friend or family member, and it can also occur as a secondary illness to depression or generalized anxiety disorder.

Although it's often seen as harmless, sufferers know that it can shift from a quirky, neurotic character trait into a devastating obsession.

"Illness often becomes a central part of a hypochondriac's identity," says Arthur Barsky, MD, of Harvard Medical School and the author of Worried Sick: Our Troubled Quest for Wellness (1988). As a result, a hypochondriac's work and relationships suffer. And those with the condition aren't the only ones who pay the price: According to Fallon, hypochondria costs billions of dollars a year in unnecessary medical tests and treatments.

Contrary to what some skeptics think, hypochondriacs are not pretending or just trying to get attention. "They're absolutely not fakers or malingerers," says Barsky. "They really feel the distress they're talking about. It's just that their feelings don't have an obvious medical basis."

"What hypochondriacs have trouble accepting is that normal, healthy people have symptoms," says Barsky. Hypochondriacs tend to be very aware of bodily sensations that most people live with and ignore. To a hypochondriac, an upset stomach becomes a sign of cancer and a headache can only mean a brain tumor. The stress that goes along with this worry can make the symptoms even worse.

Web Can Be Misleading

Hypochondriacs are often not particularly careful about where they get their health information. To many sufferers, Gray's Anatomy, a half-remembered TV movie, and a harrowing health story about your hairdresser's friend's grandmother are all equally legitimate sources.

This can lead to serious trouble for hypochondriacs using the vast and unregulated web.

"A lot of the stuff on the Internet, especially on health-related bulletin boards, is pure impression and anecdote," says Barsky, "and they just don't have a lot of scientific validity."

Even the most reputable health web sites with the most accurate information can cause trouble for the hypochondriac. "Hypochondriacs tend to latch onto diseases with common or ambiguous symptoms or that are hard to diagnose," says Fallon. For example, illnesses such as HIV or lupus, and neurological disorders including multiple sclerosis can cause vague symptoms like fatigue, swollen glands, and strange physical sensations.

With symptoms as common as these, it's easy for hypochondriacs to become convinced they're sick.

Second-Guessing the Doctor

Barsky and Fallon say hypochondria often breeds suspicion and distrust between a sufferer and his or her physician. Some doctors may be too quick to dismiss the worries of hypochondriacs, and hypochondriacs are likely to ruin relationships with good physicians by second-guessing them from the start.

Hypochondriacs may "get suspicious when their doctor doesn't give them a referral or a test they ask for," says Fallon. "They can feel like they're not being listened to, and so they'll go shopping for another doctor and wind up repeating the process."

No good doctor will order an MRI every time your ears are ringing or a colonoscopy every time your stomach's upset.

"The solution is not to get tested for everything all the time," says Barsky, "since that feeling of relief doesn't last anyway." Instead, hypochondriacs need to learn to get help and change their way of thinking.

Resist the Surfing Urge

Treating hypochondria, once believed to be almost impossible to cure, has improved a lot in the last decade.

Fallon was a pioneer in using antidepressants like Prozac and Luvox to treat hypochondriacs.

Barsky has had great success in using the techniques of cognitive behavioral psychotherapy -- persuading hypochondriacs to change their responses to anxieties and wean themselves off the behaviors that get them in trouble.

For instance, Barsky says, a hypochondriac needs to resist the compulsion to self-diagnose and to seek assurance from doctors and friends. The best one can do is to get regular medical treatment from a trustworthy doctor trust and to live a healthy life.

Fallon agrees: "In a loose sense, a hypochondriac becomes almost addicted to looking up information, examining himself, and getting reassurance from other people," he says. "Checking just makes things worse."

And what about using the Internet to look up that worrisome symptom? "If it's just going to make you upset," says Barsky. "Don't do it."

Originally published Sept. 23, 2002.