Heart Disorder can be Misdiagnosed as Epi.

[Zoe]

Hi folks,
This came in my mail today from a cardiologist who runs this board at About.com. A must read!


"In the Spotlight
The Mistaken Diagnosis of Epilepsy - Another Cause
In the October, 2007 issue of Heart Rhythm, physicians from Belgium report that young patients may be receiving the false diagnosis of epilepsy, when in fact they have Long QT...read more"

Full article:
http://heartdisease.about.com/b/a/254779.htm?nl=1

[Birdbomb]

Boy Zoe, reading that was like opening a Pandora's Box! One article after another on several possible causes of misdiagnosis. Now I have a ton of questions to ask my doctor.

Thanks!

[Bernard]

Nice find Zoe.

Previously, I reported on a similar phenomenon involving misdiagnosing vasovagal syncope as epilepsy. Sometimes, when the brain is deprived of oxygen due to insufficient blood flow (because of, for instance vasovagal syncope or LQTS), the result can be seizure-like movements, even if a true seizure is not present. In other words, seizure-like muscle activity does not equal epilepsy in all cases.

[RobinN]

I have a friend Zoe, whos husband was misdiagnosed for years, and it turned out it was a rare blood disorder. Not sure why that wouldn't turn up in a blood test, but it goes to show that the basic tests aren't always accurate.

[brain]

Great article Zoe!

I have a great team! Primary, neurologist,
and Cardio. Can't get any better than
that!

[BIGMAN131307]

Boy Zoe, reading that was like opening a Pandora's Box! One article after another on several possible causes of misdiagnosis. Now I have a ton of questions to ask my doctor.

Thanks!

Wow! Now I have some more things to talk with my Neurologist tomorrow.

[RobinN]

Doesn't that feel great? I love knowledge!

[brain]

Ok I made mention to this article to some
of my Cardio-Team folks (Surgeons &
Cardiologists); they are somewhat a little
"concerned" about that publication.

1) While it may be "true" one can be
misdiagnosed and it can be something
else.

2) It can be possible that the person with
epilepsy having both cardiac and epilepsy
medical problems

3) Or it can be a case issue like what I
have.

In a way, the article 'scares them'. It's fine
to be checked out via Holter Monitoring or
if you have a family history of cardiac problems
or if you're adopted and have an unknown
medical history, or if your Primary Doctor
is seeing problems such as High Blood Pressure,
Irregular Heart Beats, or something that would
warrant a visit to the Cardiologist. But usually
a Neurologist would check for the Carditoids
via the Scans if you had one performed via
the MRI and he/she had checked your pulse
and circulation on your vessels to your neck.
And if you have had EEG, ambulatory EEG, video EEG - the
EKG (or ECG) is also recorded usually on the
bottom of the machine would indicate the
cardiac system and if there was any cardiac
problems; it would have been revealed on it.

This is what they have informed me. And in
addition, if such was found the Neurologist
(or Epileptologist) would summon a Cardiologist
to review it as well or order up a Holter Monitor
and/or HR/BP Monitor (HR - Heart Rate / BP -
Blood Pressure Monitor) - and you would have
been given a diary to log what you were doing
just like if you were connected to an ambulatory EEG.

=====================

FROM BRAINY:

Additional information in newer posting above

[RobinN]

So please explain how a grown man was told that he had epilepsy, was put on epileptic drugs. For a number of years he had to live on these meds and continue to have seizures. It was a fluke that he was explaining his symptoms to his cardiologist, and some tests were taken. It was found out that he has a rare blood disease that was not allowing his heart to get enough oxygen to the brain.

It can go unchecked, and not every "team" has your overall health in mind.

Brain you obviously have a record that can be followed. Many of us are dealing with being introduced to the medical word where quite a few tend to have blinders on. If the patient does not ask the correct questions, the doctor does not choose to approach the subject. I think your Cardio-Team folks don't have a clue as to what some of us run up against on the patient side of the spectrum.

Of course this is MY OPINION.

[brain]

Robin:

As a special favor to you; I phoned a Cardio-Surgeon
at home, and inquired about it, and he informed me
that if the Neurologist or Epileptologist had properly
ran all tests and had seen that the brain was being
deprived of oxygen - he should have then been taken
to another specialist who is called a Stroke and
Neurovascular Specialist or simply a Neurovascular Specialist.

He/She then after an evaluation would have then
would have ordered up additional tests and then
if the problem warranted a Cardiologist; would have
summoned for the Cardiology or made referral to a
Cardiology along with all test results and findings.

And from there the issue would have been found
and corrected.

==============================

I did some research online in regards to
Neurovascular Specialist since I've never heard
of them before (and some you would recognize
are in conjunction with Cardiology):

And these are the probably the most recognized
ones (famous places) - One for the USA and the
other for our Canadians:

For the United States:


Cedars-Sinai Neurovascular

neurosurgeons treat the full range of neurovascular conditions including:

* Arterial dissections
* Arterial cranio-cervical trauma
* Arterial venous fistula: cerebral or spinal
* Arteriovenous malformations
* Cerebral arteriovenous malformations
* Carotid artery dissection
* Carotid artery stenosis
* Cerebral aneurysms
* Fibromuscular dysplasia
* Intracranial arterial stenosis
* Moyamoya disease
* Non-ruptured cerebral aneurysm
* Stroke and TIAs (transient ischemic attacks)
* Subarachnoid hemorrhage-ruptured cerebral aneurysm
* Venous sinus thrombosis
* Vertebral artery dissection
* Vertebral artery stenosis

Specialists at the center also manage less common vascular problems such as spontaneous or traumatic carotid of vertebral dissections; neck or brain artery injuries due to trauma; vasculitis-related disorders of the neck and brain; epistaxis; head and neck, facial or orbital vascular malformations; pre-operative tumor embolization; venous sinus occlusion; and vertebral compression fractures.

And for our CANADIANS:

For CANADIANS - Neurovascular Information Site & Hospitals

[Bernard]

brain, I have to agree with Robin. Most of the doctors I have known don't investigate every possibility. Then there is the whole issue with many patients who don't have health insurance and cannot afford batteries of expensive tests. I think that a lot of patients fall through the cracks.

[RobinN]

if the Neurologist or Epileptologist had properly
ran all tests and had seen that the brain was being
deprived of oxygen - he should have then been taken
to another specialist

Sorry to be such a pain, Brain
I really appreciate the phone call and all the time you spent following up on this.

However, I am seeing more of the should-a, would-a, could-a reaction in the past year of my dealing with the medical community. Perhaps CA is the exception, and in all the other states, the doctors, surgeons and specialists are working in harmony with each other. My friend spent years taking the wrong medicine for the wrong diagnosis.

How often does this happen?
Or how often do they not even look for a reason and just provide a med to stop the symptom.

Zoe, gave me a great example:

Here’s the “analogy” I’ve been using which may clarify this. Two people begin to have seizures. Each is evaluated at an epilepsy center and each is diagnosed as having temporal lobe epilepsy; complex partial seizures. They are each prescribed anticonvulsants. One complies but the other decides to get a second opinion. Her doctor runs more tests and discovers that she has magnesium deficiency. When this is corrected her seizures stop. Question: Did each of these people have epilepsy. By definition [recurring seizures] yes.

Again, I really appreciate you following up on this idea.
I have had specialists not even want to talk with my other doctors. Even when I suggest it. I have had others not bother to tell me that I must approve the communication between specialists. I have not been asked for prior tests, others not even wanting to bother to look at prior tests. Feel at times like I was run in circles.

Brain, I wouldn't even know about some of the other possiblities if it wasn't for my research on the internet. I get very worked up about the state of our medical care.
Yes, we do have insurance with an HMO. That is part of the problem. Medical lawsuits are the other major problem.

[brain]

brain, I have to agree with Robin. Most of the doctors I have known don't investigate every possibility. Then there is the whole issue with many patients who don't have health insurance and cannot afford batteries of expensive tests. I think that a lot of patients fall through the cracks.

You have a valid point there, but those who have
had Scans ~ the Neurologist / Epileptologist is the
one who usually orders it up; and they have codes
for the diagnostics, and when patients are entered
in - they are given a questionnaire to fill out. The
Tech or Interviewer is SUPPOSED to ask the
patient some questions BEFORE they run the scan
anyway.

And when it is complete, the Radiologist Doctor
is SUPPOSED to read the patient sheet chart or
on the computer as what to look for, and review
it.

Sometimes the Neurologist / Epileptologist wants
to review it themselves.

Now the article itself states this clearly: it was
in reference to YOUNG CHILDREN. It stated
absolutely NOTHING about adults.

But when you are looking at Today's Neurology,
they are pretty much going all out with children
and taking the extra-measures for the child's
sake and safety.

I was only responding to the postings when
the adults made reference to being in application
to themselves (as an adult).

Sorry if I did not come across clearly again.

[brain]

Sorry to be such a pain, Brain
I really appreciate the phone call and all the time you spent following up on this.

===========================

Brain, I wouldn't even know about some of the other possiblities if it wasn't for my research on the internet. I get very worked up about the state of our medical care.
Yes, we do have insurance with an HMO. That is part of the problem. Medical lawsuits are the other major problem.

Robin,

The Article was specifically geared if you
read it correctly, was for children who were
misdiagnosed as "epilepsy" when they were
not, but rather they had a cardiac issue instead.

If your daughter was properly diagnosed with
epilepsy and have all the substantial findings
and evidence to back it up accordingly, and
not just one or two findings, but a lot of it.
Then you do not need to worry about it, but
it wouldn't 'hurt' to have a simple cardiac
check-up and it is not costly at all, and HMO,
POS, and various Insurances including Medicare
and Medicaid covers this. (Better to play safe
than sorry - and rule out cardiac and have it
in the chart. And that way she would have a
'history' of having had a simple cardiac
evaluation (which is absolutely painless, the
PCP (Primary Care Doctor) can often do this
in their own office) and it's recorded and
documented.)

Just a thought there ...

I have had specialists not even want to talk with my other doctors. Even when I suggest it. I have had others not bother to tell me that I must approve the communication between specialists. I have not been asked for prior tests, others not even wanting to bother to look at prior tests. Feel at times like I was run in circles.

Anytime you have a Doctor who does not want
you to communicate or refuses to communicate
with other Doctors isn't a good Doctor to begin
with. And any Doctor who gets "offended" because
you want to obtain a second opinion. Isn't a good
Doctor either. And those who scoffs at prior tests
and/or history; and insists on current events,
should be deemed "proceed with caution".

I have had some of those Doctors, even to a
point where my own Primary Doctor had just
about enough (so did I), and found me another
one. Open Line Communication is a MUST for
the Doctors to be able to talk with one and
another in regarding to your well being or your
daughter, spouse, or family member. Doctors
have to be in tune with each other, they cannot
shut each other out. Teamwork is involved.

I understand and relate completely about "going
around in circles". It can drive you up the wall
and to a point of pulling all your hair out and
make you go "ga-ga"!

It has known effects on some people where they
developed resentments and disrespect for Doctors
altogether and flatly refuse to receive ANY Medical
care at all. (Who can blame them?)

[Zoe]

This is one more article on cardiac disorders being easily misdiagnosed as epilepsy. This is a press release from the American College of Cardiology:

ACC News Releases

Contact: media@acc.org
Seizure-Like Attacks May Mean Cardiovascular Problems, Not Epilepsy

(July 1, 2000)--Physicians have long suspected that many patients being treated for epilepsy aren't actually suffering from the disease. Now a new study published in the July 2000 issue of the Journal of the American College of Cardiology reveals that the rate of misdiagnosis may be more than 40 percent.

"Two out of five patients in our study had been told that their blackouts were caused by epilepsy, and many were taking powerful drugs to treat the condition--with little if any benefit," explained lead author Dr. Amir Zaidi, of the Manchester Heart Centre at the Royal Infirmary in Manchester, England. "In reality, these patients had heart or circulation problems that could be effectively treated with cardiac drugs or pacemakers."

The study was born when local neurologists began sending Dr. Zaidi epilepsy patients who had uncertain diagnoses or who had failed to respond to anticonvulsant medication. In the resulting study, Dr. Zaidi and his colleagues put 74 of these patients through simple cardiovascular tests--head-up tilt tests and carotid sinus massage--to see if their problems were really cardiovascular in nature. In the head-up tilt test, patients are strapped to a table and slowly tilted until they are nearly vertical; blood pooling in the legs reduces blood flow to the heart and causes fainting in susceptible individuals. In carotid sinus massage, pressing on the carotid artery in the neck slows the heart down and causes fainting in susceptible individuals.

What Dr. Zaidi and his research team found surprised them. Almost 42 percent of the patients had been incorrectly diagnosed with epilepsy. Instead, many suffered from a severe form of fainting called vasovagal syncope.

"We were taken aback by the level of misdiagnosis, which was at least twice as high as expected," said Dr. Zaidi, noting that other studies have suggested misdiagnosis rates of only 20 percent. "The most important message of our study is that if a patient with seizure-like attacks thought to be caused by epilepsy does not respond to treatment, the physician should reconsider the diagnosis."

For Dr. Melvin M. Scheinman, of the University of California, San Francisco, the study's value lies in its discovery of just how common the misdiagnosis of epilepsy is.

"It has long been appreciated that apparent 'epileptic fits' may have a cardiac cause," said Dr. Scheinman. "The importance of Dr. Zaidi's study is to highlight the frequency of this association."
-----------------
http://www.acc.org/media/releases/hi...00/seizure.htm
It may be just as easy to misdiagnose someone with magnesium deficiency with syncope as epilepsy. The point to make here is we need to keep our radar up and not lock ourselves into conclusions. 70% of the time the cause of seizures in those labeled with epilepsy is not known. It is up to those of us who have seizure disorders to be vigilant about looking at and addressing possible causes.
All the massive publicity about syncope goes hand in hand with the introduction and marketing of a treatment, a defibrillator. The same type of "awareness campaigns" are waged when new epilepsy drugs are introduced as well. It is called "Branding a condition" a marketing strategy used to create a market for drugs and other products. The strategy is to "raise awareness" about a condition, like epilepsy while also pairing this information with what seems to be the one and only solution, the drug being marketed, or insertable loops for syncope, VNS, for seizures.
It is right out of propaganda 101, an doctors are the prime target as they as so good at selling the products. We do well to keep our feet on the ground and look at issues, but not get caught up into buying into anything hook line and sinker. Seizures are as unique as the person who has them. Each treatment plan needs to be individualized.

[brain]

Great Article Zoe!
And it does line up with Post #10
Which Neurovascular isn't just
limited to that area only,
in addition Cardiology isn't just
limited either. Just awesome
Article!

The study was born when local neurologists began sending Dr. Zaidi epilepsy patients who had uncertain diagnoses or who had failed to respond to anticonvulsant medication. In the resulting study, Dr. Zaidi and his colleagues put 74 of these patients through simple cardiovascular tests--head-up tilt tests and carotid sinus massage--to see if their problems were really cardiovascular in nature. In the head-up tilt test, patients are strapped to a table and slowly tilted until they are nearly vertical; blood pooling in the legs reduces blood flow to the heart and causes fainting in susceptible individuals. In carotid sinus massage, pressing on the carotid artery in the neck slows the heart down and causes fainting in susceptible individuals.

[RobinN]

Excellent points Zoe.

Brain - Insurance is totally controlling my choices.

[brain]

Brain - Insurance is totally controlling my choices.

I hear you Robin, I hate HMO's;
had to live with them!

They would leave me in the midst
of state of bewilderment! I had one
HMO that sent me over 300+ page
manual via the mail ...

For example:

Page 21 - You are covered for XXX

then only to find on

Page 129 - You are not covered for
XXX unless blah blah blah blah


then if you hadn't had a headache yet
flip over to

Page 228 - You are covered for XXX
providing that Dr. X has blah blah blah
and Dr. XX has also blah blah blah as
stated on page 21.


then to complicate things

on Page 242 - You are not covered for
XXX if Dr. X has blah blah blah and Dr.
XX has not blah blah blah blah.


I'm surprised no one hasn't sustained
massive health-careititis yet!

=========================

THEN I had an HMO - GET THIS:

IN THE EVENT OF CARDIAC EMERGENCY,
PLEASE DIAL 1-800-XXX-XXXX
AND PRESS XX
ENTER YOUR MEMBER ID NUMBER
PRESS POUND
ENTER YOUR PLAN ID NUMBER
PRESS POUND
ENTER YOUR GROUP NUMBER
PRESS POUND
AND A REPRESENTATIVE WILL BE
WITH YOU SHORTLY.
AND WE WILL DIRECT YOU TO THE
PROPER HOSPITAL, AND PROVIDE YOU
THE AUTHORIZATION NUMBER AND CODE.



(excuse the profanity) HELL LIKE I'M
GOING TO DO ALL OF THAT, I'M DIALING
911 AND LET THE HOSPITAL FIGHT WITH
THE HMO!



--------------------------------------

I'm sorry, I cannot go through that
nonsense, and I wonder how many
people have actually had heart attacks
and died just following that stupid rule
up there???

[brain]

Sorry for the



of the thread ...
Had to VENT on that HMO!

While I've no longer have them
they still have my blood boiling.

I feel sorry for ROBIN

((((((( HUGS ))))))))))

[RobinN]

Thanks Sharon

I was thinking when I was reading those instructions, one is lucky in that event just to make it to a phone, let alone read or follow a list of instructions.