do you wonder if you could be amongst the misdiagnosed?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

do you wonder if you could be amongst the misdiagnosed?

Postby blossom » Thu Nov 01, 2012 4:53 pm

www.medhelp.org/posts/Multiple.../Misdi ... ../1732543

The following was in my email tonight - the numbers really are significant and the damage done by an erroneous MS diagnosis is even greater.

http://medicalxpress.com/news/2012-05-m ... -year.html

"Misdiagnosis of MS is costing health system millions per year
May 9, 2012 in Neuroscience

It is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease — a misdiagnosis that not only causes patients potential harm but costs the U.S. health care system untold millions of dollars a year, according to a study published online today in the journal Neurology.

The study is based on a survey of 122 multiple sclerosis specialists nationwide and was conducted by researchers at Oregon Health & Science University and the Portland Veterans Affairs Medical Center. Neurology is the medical journal of the American Academy of Neurology.

The survey found that all but six of the multiple sclerosis specialists — more than 95 percent — had seen at least one patient within the past year who had been diagnosed with MS by another medical provider, but the MS specialist "strongly felt [the patient] did not in fact have MS."

Almost three-quarters of the MS specialists said they had seen at least three patients within the past year who they believe had been misdiagnosed. More than one-third of respondents said they had seen six or more patients within the past year who had been misdiagnosed. In total, the study estimated that the 122 MS specialists had seen almost 600 patients within the past year who had been misdiagnosed with MS.

Many of the MS specialists said a significant percentage of these misdiagnosed patients had already begun disease-modifying therapy for MS, which carries potentially serious side effects and can be very expensive, often at least $40,000 per patient per year. Based on the responses from the MS specialists, the study estimated that the 122 MS specialists had seen approximately 280 patients who had been misdiagnosed and were receiving MS treatment — costing the health system at least $11 million per year in unnecessary and inappropriate treatment for that group of patients alone.

"What we found was that the misdiagnosis of MS was common -- perhaps more so than previously thought. This has significant consequences for patients and for our health care system as a whole," said Andrew Solomon, M.D., the lead author of the study.

Solomon worked on the study while he was a post-doctoral fellow in multiple sclerosis at OHSU and at the Portland Veterans Affairs Medical Center. Solomon is now an assistant professor at the University of Vermont College of Medicine and is a member of the University of Vermont Medical Group Neurology Service at Fletcher Allen Health Care.


Dennis Bourdette, M.D., the senior author of the study and director of the OHSU Multiple Sclerosis Center, said the misdiagnoses not only meant patients were getting expensive and potentially harmful treatments they didn't need, but they were also not getting the appropriate treatment for the diseases they may have had.

"These patients were getting the wrong treatment — and missing out on the correct treatment," Bourdette said.
The survey also detailed the emotional and ethical challenges of informing a patient of a misdiagnosis. More than two-thirds of the MS specialists said that informing a patient with a diagnosis of MS that they likely did not have the disease was more challenging than informing a patient of a new diagnosis of MS. And, in an especially surprising finding, about one in seven of the MS specialists said they had sometimes chosen not to inform a patient of their suspected misdiagnosis, citing among their reasons the fact that the patients were not receiving MS treatment, or the potential psychological harm in changing a diagnosis.

The study underlines a significant but underappreciated problem within the U.S. health care system: the dangers, costs and physician challenges associated with misdiagnosed diseases.

In recent years, medicine has begun paying more attention to medical errors and adverse medical events -- giving a patient the wrong drug or too much of it, for example, or not preventing avoidable infections. But less attention has been paid to the rate of diagnostic errors — which experts estimate average about 10 percent across a wide variety of medical conditions.

Often, these diagnostic errors happen with diseases, like MS, "that don't have a definitive test," said Eran Klein, M.D., Ph.D., the third co-author of the study and an assistant professor in OHSU's Department of Neurology. "These diseases instead require well-honed skills of a professionally trained clinician who is knowledgeable about the disease, can study a patient's medical history, perform a detailed physical examination and evaluate additional medical information to make the proper diagnosis. This study sheds light on the importance of clinical expertise in recognizing and correcting diagnostic error."

Provided by Oregon Health & Science University" .
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby NHE » Fri Nov 02, 2012 1:23 am

And, in an especially surprising finding, about one in seven of the MS specialists said they had sometimes chosen not to inform a patient of their suspected misdiagnosis, citing among their reasons the fact that the patients were not receiving MS treatment, or the potential psychological harm in changing a diagnosis.


What utter BS! This is unforgiveable and is malpractice!

Dennis Bourdette, M.D., the senior author of the study and director of the OHSU Multiple Sclerosis Center, said the misdiagnoses not only meant patients were getting expensive and potentially harmful treatments they didn't need, but they were also not getting the appropriate treatment for the diseases they may have had.



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Re: do you wonder if you could be amongst the misdiagnosed?

Postby cheerleader » Fri Nov 02, 2012 6:47 am

I purchased this paper in September and wrote about it at length on Facebook, because I couldn't believe that abstract, NHE and Blossom. It's truly horrifying. I'll copy over what I wrote on FB here:
https://www.facebook.com/notes/ccsvi-in ... 6652682211

We’ve been discussing the importance of going through all of the differential diagnoses before accepting an MS diagnosis as final--especially before beginning a disease modifying treatment. For a list of 100 other diseases and medical situations which can be mistaken for MS, please see this publication:
http://msj.sagepub.com/content/14/9/1157.full.pdf+html

It is apparent that diagnosing MS is not an exact science, but more akin to a process of elimination.

In the three years since Marie and I began this page, we’ve heard from readers originally diagnosed with MS, who were later told it was actually Celiac disease, low vitamin B12 levels, migraine, Lyme disease, ischemic disease, Hughes Syndrome, TIAs, co-infection with Cpn and other illnesses. And many, many of you, like Marie and my husband, have CCSVI from traumatic injury, venous malformations and misalignment. My question remains....shouldn’t venous disease, or CCSVI, be investigated as a differential for MS? It is scientifically proven that cerebral blood flow issues can manifest as white matter lesions in the brain.

Here’s more on “undiagnosing MS” from a paper published in Neurology journal last year, authored by three neurologists. I purchased the paper to learn more, so I could share this information with you.
http://www.neurology.org/content/early/ ... 2.abstract

Three academic neurologists sent out a questionnaire to other academic neurologists in the US---they utilized names and e-mails from the Consortium of MS Centers registry and via google.

242 individual neurologists and 122 survey were completed--which resulted in a response rate of 50.4%

These neurologists were asked:
“Have you ever evaluated a patient who carried a diagnosis of MS (given by another provider) for longer than a year who, after your neurologic exam and review of lab data, you strongly felt did NOT in fact have MS?”
Nearly all respondents (95.1%) had evaluated such a patient in the past.
Over one-third (34.4%) reported seeing 6 or more misdiagnosed patients in the last year, including 20 (17.2%) respondents who had seen 10 or more such patients.

To estimate the number of patients who had been seen with a misdiagnosis of MS, they used the median from the range of each individual response to this question and assigned the value of 10 for a response of “10 or more,” to estimate the total number of patients. Using this method, the respondents had seen an estimated 598 patients misdiagnosed with MS within the last year---but this estimate is made on the lower side, since 10 or more could be many more than 10.

One very disturbing fact from this survey were the number of patients whose neurologists felt were misdiagnosed, yet who were on disease modifying treatments. Within a period of one year all respondents had seen an estimated 279 patients misdiagnosed with MS who were on a DMT.

When asked what these neurologists believed to be the correct diagnosis for these patients, most chose “nonspecific white matter abnormalities, small vessel ischemic disease, and migraine." These changes on MRI are all due to vascular issues. In each instance, blood flow changes, low oxygen and hypoperfusion lead to white matter lesions. These changes are not due to an autoimmune process, and being on an immune modulating drug could be harmful to these patients. Also, there could be underlying issues, like high blood pressure, venous or arterial disease that are not being addressed. This misdiagnosis is not benign.

Other responses to what the neurologists believed might be the correct diagnosis were Neuromyelitis Optica (NMO) psychiatric disease, fibromyalgia, cervical spondylyosis with myelopathy (cervical neck damage due to misadjustment or injury) and celiac disease. Each of these diseases has a specific treatment protocol, and none of them is MS drugs.

Please make sure you and your diagnosing neurologist have throroughly reviewed your blood and cerebrospinal fluid results, as well as your MRI. I've often mentioned how we had Jeff independently tested for APS (Hughes Syndrome) and Lyme disease. He also had a lumbar puncture which showed banding before his diagnosis was made. Here is the newly revised McDonald criteria for MS diagnosis.
http://journals.lww.com/neurotodayonlin ... r,.10.aspx

We're all our own very best advocates, and knowledge is power. If you have any doubts, please speak with your doctors.


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Cece » Fri Nov 02, 2012 11:02 am

A suspected misdiagnosis is only suspected. It doesn't sound like the specialist has the answer of what other diagnosis to offer, if the MS is the misdiagnosis. But I would still expect specialists to keep the patient informed of how certain the diagnosis is, and it's awful to hear that this is not the case. MS is a disease of exclusion and the patient needs to know if all other diseases have been excluded. If misdiagnosis is suspected, then what does the patient have? I bet that's why the specialist wouldn't bring it up, because they can't answer that question.

My diagnosis changed a few times in the first two years. First diagnosed MS, then diagnosed CIS, then diagnosed neurologically normal, then back to being diagnosed MS. It was difficult to have the diagnose change every time I went to the neurologist.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby blossom » Fri Nov 02, 2012 9:48 pm

the last neuro. i went to i asked him to test me and treat me as if i had no diag. of ms. he ran a lot of test. nothing jived "as usual". he kinda scratched his head and said well you've got something wrong. of course being the lady i am my reply was "no shit". but he suggested i go on tysabri my answer was no. i asked him if any of the test could explain why positioning my neck gave me better movement. no he couldn't. asking him to refer me to a neurosurgeon who would remove cervical bone spurs and stenosis he said no that wouldn't help. ---------- but he wanted me to try tysabri even though his findings were that i had "something wrong". 22 yrs. of this bullshit! yet, once you're branded with the symtoms they call ms -- they have a cocktail of goodies. but nothing solid. but they'll give them to any takers--because "we have something wrong". kinda like a gun that holds 6 bullets with one bullet in the chamber--i think it's called "russian roulette"
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Rosegirl » Sat Nov 03, 2012 3:26 am

More than 20 years after getting a diagnosis of MS, I got to be part of one of the first CCSVI trials that had neurologist who supported the theory that there may be a connection between MS and CCSVI.

My only symptom was that my left leg didn't work well. Over the years I had seen several neurologists and each had said that my condition was definitely less severe than most. MRIs and other tests always seemed to confuse or surprise them.

At the one month follow up appointment after the venoplasty, I asked the neurologist to review the films from the procedure. I had to press him, but he admitted that based on the films, a neurological exam and past test results, there was no evidence that I had MS. I had a vascular problem. I stopped taking Tysabri (after having been on Avonex for eight years) and haven't been back to a neurologist since.

This is not to suggest that my experience is typical or that anyone should stop taking medication or change their medical care. But it does point out the glaring problem that doctors from one specialty usually don't talk to other types of doctors. I don't think there was any conspiracy or bad intention. I do think that my neurologists did their best to treat me within the bounds of their education and experience. Had I not insisted on pushing them outside their comfort level, I would still be on medication that gave me no symptom relief or hope of any improvement because they thought that was the best chance to preserve my health.

In the end, our doctors are coaches, but we are the ones who will deal with the outcome of treatment (or the lack thereof). Now I no longer see a neurologist. I have had three venoplasties that have had some interesting improvements. I still can't walk, and there is little to no follow up from those doctors because they did all they can do, so they have moved on to other patients. Basically, I am on my own, and there is no longer any doctor or specialty that will oversee my care.

So now I have just started seeing a chiropractor for atlas orthogonal treatment. It's much too early in the process to declare it a success, but I have seen encouraging signs so far. I have the time and money to try another modality, but I only tell you that to suggest you might have another method of treatment that might be worth some research.

In the end, it's all up to each individual to decide what kind of care is available, affordable and worthwhile. I no longer have anyone who claims to be competent to manage my care, but one benefit of not "having MS" is that I have hope that another type of treatment might work. Living with hope is a vast improvement, regardless of whether my symptoms have improved yet.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby frodo » Sun Nov 04, 2012 12:03 pm

Maybe everybody is misdiagnosed with an imaginary autoimmune disease ...
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby blossom » Sun Nov 04, 2012 12:39 pm

could be frodo, keeping in mind that the autoimmune theory is, after all, a theory -- that took off pretty much dusting other possibilities---this has shown it's colors big time with ccsvi for instance.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby marcstck » Mon Nov 05, 2012 1:02 am

As many of you may know, I've been beating the misdiagnosis drum for years, and have written about it extensively on my blog. I was involved in a study at the National Institutes of Health that was launched specifically because they needed to find a pool of patients they could be confident actually had MS for Use in future studies.

He NIH had been finding such high levels of misdiagnosis amongst the patients included in some of their previous studies that the results Of those studies were basically invalidated. They pegged the misdiagnosis rate, among patients diagnosed by MS specialist, at somewhere between 10%-15%. Shocking numbers to be sure, but really not all that surprising given that MS is a diagnosis by elimination..

I strongly encourage anybody who has legitimate questions regarding their diagnosis to follow-up as robustly as They can. I've consulted with various neurologists here in New York City, as well as the folks at the Johns Hopkins MS Center, and finally the staff at the National Institutes of Health, the US governments medical research operation

One of the confounding factors in this whole mess is that many of the diseases that Can be mistaken for MS are no more treatable then multiple sclerosis. On the other hand, some are, and patients owe it to themselves to fully investigate any doubts regarding their diagnosis they may harbor..

Here's a link to an essay I wrote about the misdiagnosis problem. It contains links to some very interesting papers on the topic.

http://www.wheelchairkamikaze.com/2011/ ... s-and.html
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby NHE » Mon Nov 05, 2012 3:36 am

It's good to hear from you Marc. I hope that you're managing all right in the aftermath of the storm.

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Re: do you wonder if you could be amongst the misdiagnosed?

Postby 1eye » Tue Nov 06, 2012 9:35 am

Maybe misdiagnosed. Hope so. Not looking forward to Funicello-like damage. Maybe "MS" diagnosis is an invitation to deny stuff to people. We give all kinds of special aids to the injured, but if you have "MS" they take away your driver's license. Maybe "MS" = CCSVI + ostracism. Certainly disability + inaction = more disability. If you have progression, use it or lose it is a hard and fast rule.

For some reason last night, when I should have fallen, in the dark, twice, at the last possible moment, I righted myself. Mostly I think it was my good leg + reflexes. Nearly 2 years ago when I was in the wheelchair full--time, a neuro said my right leg would go next. Hah! What does she know?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby blossom » Wed Nov 07, 2012 10:14 pm

all this is hard to handle. yes it is up to each of us to keep pounding and searching and trying . but, with a disease that brings so much damage in so many ways to some-say travel and going from dr. to dr. is very hard if not impossible-then there's the cost. some can afford it some can't. then there's some that are blessed with a companion or family to assist them and there are many alone. all this comes into play when you want to do all this. and to be sitting on a ticking time bomb like the symptoms we have and have to fight even if you question or try to get some dr.'s to look at other possibilities. then you get a glimmer of hope and the dr. or treatment is in tim buck two. and you haven't been able to make sure you even got what they've branded you with so you might be dragging your sorry worn out desparate body and spending your life savings in vain because you have been misdiagnosed. but then there is that answer that you get--well, it works for some but not everyone. no shit! "could be we all don't have the same problem to start with." did they ever think of that? but, that's not their problem. it's ours.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Rosegirl » Thu Nov 08, 2012 5:27 am

Blossom, Everything you said is correct. The course of dealing with health issues can be long, painful, frustrating and expensive. It's up to each of us to do the best we can to research, manage and treat whatever ails us.

But there is one huge difference over our knowledge base of just a few years ago. Hope! We have Hope! A diagnosis of MS left us without any hope, only the choice to take drugs to try to hold a disease at bay.

CCSVI, or atlas orthogonal (AO) or any of the other new (or resurrected) theories gives us the potential to find practitioners other than neurologists.

Hope isn't a cure, but it makes things a lot more bearable until that cure happens.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Rompers » Thu Nov 08, 2012 5:51 am

Rosegirl, I could not agree with you more - "Hope" is very powerful!!! ...and I too have it back!
Procedure by DrS 5/3/11 SI
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Robnl » Sun Nov 11, 2012 7:50 am

blossom wrote:could be frodo, keeping in mind that the autoimmune theory is, after all, a theory -- that took off pretty much dusting other possibilities---this has shown it's colors big time with ccsvi for instance.



Hi Blossom. it's not even a theory...it's a hypothesis...
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