Aa
Misdiagnosis of MS more common than thought
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-misdiagnosis-ms-health-millions-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"
http://medicalxpress.com/news/2012-05-misdiagnosis-ms-health-millions-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"
Agreed Sailorsong! They (the VA) do not like to diagnose MS because it is service connectable if the symptoms show up within 7 years from release of active duty, it's presumptive to service and connected at 40% and above.
I posted this over in Limbo Forum yesterday and it seems to be related to this thread as well. This is a great conversation and a great reminder of why getting the right diagnosis is more important than an immediate diagnosis that may be made in error.
Happy Monday, everyone!
Laura
***********
Most Common Diagnoses for Patients Without MS
--------------------------------Colorado-------------Dalhousie-----------------Marshfield
---------------------------------(N 139)----------------(N 52)----------------------(N 70)
Psychiatric disease-----63 (45%)-------------14 (27%)-------------------53 (76%)
Migraine headaches-----29 (21%)--------------7 (14%)---------------------2 (3%)
Stroke or TIA----------------7 (5%)----------------3 (6%)-----------------------2 (3%)
Peripheral neuropathy---6 (4%)-----------------3 (6%)----------------------1 (1%)
Cervical stenosis----------4 (3%)-----------------1 (2%)----------------------1 (1%)
Benign sensory symptoms 0------------------11 (22%)--------------------8 (11%)
Vertigo---------------------------0----------------------3 (6%)----------------------0
************
http://www.neurology.wisc.edu/publications/2007/Neuro_2.pdf
Happy Monday, everyone!
Laura
***********
Most Common Diagnoses for Patients Without MS
--------------------------------Colorado-------------Dalhousie-----------------Marshfield
---------------------------------(N 139)----------------(N 52)----------------------(N 70)
Psychiatric disease-----63 (45%)-------------14 (27%)-------------------53 (76%)
Migraine headaches-----29 (21%)--------------7 (14%)---------------------2 (3%)
Stroke or TIA----------------7 (5%)----------------3 (6%)-----------------------2 (3%)
Peripheral neuropathy---6 (4%)-----------------3 (6%)----------------------1 (1%)
Cervical stenosis----------4 (3%)-----------------1 (2%)----------------------1 (1%)
Benign sensory symptoms 0------------------11 (22%)--------------------8 (11%)
Vertigo---------------------------0----------------------3 (6%)----------------------0
************
http://www.neurology.wisc.edu/publications/2007/Neuro_2.pdf
I still can't help but hope that my MS diagnosis is incorrect but in the meantime, I will be taking the DMD's. The risk of not taking them is too severe.
thanks, Sho, for sharing those links. I couldn't get the first one to work, but the rest of the links were find. The person who died from PML but didn't have MS is the best example, yet, of why the dx should not be made hastily.
Great discussion! If anyone is interested, here are the responses of some MS neuros/researchers to this study:
Basic reaction:
http://multiple-sclerosis-research.blogspot.com/2012/05/misdiagnosis-doctors-not-in-house-mode.html
Summary of the article:
http://multiple-sclerosis-research.blogspot.com/2012/05/research-misdiagnosis-in-ms.html
Another article in the same issue on neuros who tell people they kinda, sorta have MS when they really think the person doesn't have MS:
http://multiple-sclerosis-research.blogspot.com/2012/05/diagnosis-mislabelling-ms.html
More nuanced take on the problems of MS dx:
http://multiple-sclerosis-research.blogspot.com/2011/08/article-of-interest-8-clinico.html
The cost of a false diagnosis to someone on Tysabri who got PML and on autopsy was found not to have MS. With the newer DMDs, the cost of misdiagnosis potentially goes much beyond money and inconvenience:
http://multiple-sclerosis-research.blogspot.com/2011/08/ultimate-price-of-false-diagnosis.html
sho
Basic reaction:
http://multiple-sclerosis-research.blogspot.com/2012/05/misdiagnosis-doctors-not-in-house-mode.html
Summary of the article:
http://multiple-sclerosis-research.blogspot.com/2012/05/research-misdiagnosis-in-ms.html
Another article in the same issue on neuros who tell people they kinda, sorta have MS when they really think the person doesn't have MS:
http://multiple-sclerosis-research.blogspot.com/2012/05/diagnosis-mislabelling-ms.html
More nuanced take on the problems of MS dx:
http://multiple-sclerosis-research.blogspot.com/2011/08/article-of-interest-8-clinico.html
The cost of a false diagnosis to someone on Tysabri who got PML and on autopsy was found not to have MS. With the newer DMDs, the cost of misdiagnosis potentially goes much beyond money and inconvenience:
http://multiple-sclerosis-research.blogspot.com/2011/08/ultimate-price-of-false-diagnosis.html
sho
Great discussion.
Mary and JJ, you guys really nailed it!
The story appeared in the Oregonian's print edition this morning.
Mary and JJ, you guys really nailed it!
The story appeared in the Oregonian's print edition this morning.
Excellent discussion. For something as interesting that's linked on the same page as this link . . . check this out:
http://phys.org/news144513954.html
Obesity and other health problems delay diagnosis of MS. Of particular note way at the bottom is that people with mental health issues are 2x more likely to be severely disabled before dx than those without.
Tell me there isn't a prejudice out there.
http://phys.org/news144513954.html
Obesity and other health problems delay diagnosis of MS. Of particular note way at the bottom is that people with mental health issues are 2x more likely to be severely disabled before dx than those without.
Tell me there isn't a prejudice out there.
I had done alot of reading since my symptoms started over 10 years ago and I had never come across a statement that said an MRI was definitive but when he said that I thought maybe there is more advanced MRI technology that what I know about. I have been tested for everything 4 times for Lyme's disease and dismissed when nothing was found. Now I am worried if he doesn't find something on the MRI I will be dismissed again (not that I am hoping he does find something) But thanks for the heads up I will give it some thought see what my test does reveal and may find an MS specialist.
So much of this gets down to a neuro getting a careful history, and performing a careful examination. Too many rely on MRI, VER, SSEP, LP, etc., as their only criteria, and, no, it isn't always a "slam dunk". Too many lazy neuros out there.
As far as citing psychological problems for presence of symptoms, it's so easy for a neuro to dismiss symptoms as "psychosomatic". I challenge any limbolander or 2nd opinion seeker to go ahead and undergo neuropsych. testing. We can prove the b@stards wrong, too.
Anyway, interesting articles, and good thread!
As far as citing psychological problems for presence of symptoms, it's so easy for a neuro to dismiss symptoms as "psychosomatic". I challenge any limbolander or 2nd opinion seeker to go ahead and undergo neuropsych. testing. We can prove the b@stards wrong, too.
Anyway, interesting articles, and good thread!
COMMUNITY LEADER
Yeah I second Lulu's comments, "what a doofus"
Look the main problems that i can see with dx MS is that it is unigue to the individual, there are common sx, common markers on MRI and other tests etc. but rarely are two patients exactly the same. The Mcdonald criteria was designed to help neuro's dx MS more easily, its been revised about 4 times since its creation.
Even the review board has stated their concerns that the MRI evidence is being given more weight than patients clinical evidence and MS still needs to be dx on clinical evidence, with other tests 'adding' diagnostic evidence. Unfortunately, many neurologist are counting lesions, some only counting in known MS locations and dismissing any other lesions not in MS locations, the mistakes are countless. Neuro's are sometimes interpreting these guidlines in unpresidented ways, making false statements based on incorrect assumptions. If you think this is an over exaduration, try reading 'Lies my neuro told me' (i think thats what its called) hundreds of stories of out right lies and false statements.
LP results add weight but neuro's are sometimes saying if there are zero 0 bands or less than 4 then its not MS, science does not support this development and from my understanding it never has been a definitive test for MS and yet thats exactly what is happening, similar things apply to MRI evidence.
I have a long list of incorrect statements about MS stated by both of the general neurologists i've seen, eg Zero brain lesions - when in fact I have a chronic number of both white matter and deep white matter lesions. Visual issues has nothing to do with MS - when in fact it does. Basic MS facts either unknown or ignored by the neuro's, they are not all perfect, all knowing and its these types of surveys/research that allows them to believe that they are never wrong.
It is true that people are being misdiagnosed but what is more previlant is the number of people who DO have MS, that are not being diagnosed until they are disabled enough for their neuro to call it - MS!
Cheers............JJ
PS education is always empowering!
Look the main problems that i can see with dx MS is that it is unigue to the individual, there are common sx, common markers on MRI and other tests etc. but rarely are two patients exactly the same. The Mcdonald criteria was designed to help neuro's dx MS more easily, its been revised about 4 times since its creation.
Even the review board has stated their concerns that the MRI evidence is being given more weight than patients clinical evidence and MS still needs to be dx on clinical evidence, with other tests 'adding' diagnostic evidence. Unfortunately, many neurologist are counting lesions, some only counting in known MS locations and dismissing any other lesions not in MS locations, the mistakes are countless. Neuro's are sometimes interpreting these guidlines in unpresidented ways, making false statements based on incorrect assumptions. If you think this is an over exaduration, try reading 'Lies my neuro told me' (i think thats what its called) hundreds of stories of out right lies and false statements.
LP results add weight but neuro's are sometimes saying if there are zero 0 bands or less than 4 then its not MS, science does not support this development and from my understanding it never has been a definitive test for MS and yet thats exactly what is happening, similar things apply to MRI evidence.
I have a long list of incorrect statements about MS stated by both of the general neurologists i've seen, eg Zero brain lesions - when in fact I have a chronic number of both white matter and deep white matter lesions. Visual issues has nothing to do with MS - when in fact it does. Basic MS facts either unknown or ignored by the neuro's, they are not all perfect, all knowing and its these types of surveys/research that allows them to believe that they are never wrong.
It is true that people are being misdiagnosed but what is more previlant is the number of people who DO have MS, that are not being diagnosed until they are disabled enough for their neuro to call it - MS!
Cheers............JJ
PS education is always empowering!
Wow! I can't believe your neuro would even utter that out loud. They know that up to 15% of people with MS don't show evidence on their MRI's, if I am remembering the number correctly. What a doofus.
There is no test for MS that is 100% sure. There is always the possibility that it could be something else but we can only hope that the doctor gets it right initially. i know I wouldn't want to be a neurologist trying to figure out MS - it is so much more complicated a process than your doc wants to make it out to be.
There is no test for MS that is 100% sure. There is always the possibility that it could be something else but we can only hope that the doctor gets it right initially. i know I wouldn't want to be a neurologist trying to figure out MS - it is so much more complicated a process than your doc wants to make it out to be.
I am new to all of this so I'm lost. My neuro just told me with todays technology you either did or didn't have MS and an MRI and VER would tell one way or the other. So how can you be told you have it if you don't?
good idea Sandy BUT if the insurance company had to pay for it, we'd NEVER get that second opinion.........I remember having to BEG for the chance of a 2nd opinion back when I had to have their approval to even ask for one.....so glad I am off of HMO insurance......
and the other catch.......you need a referral to see this particular doctor or that particular doctor.........drives me totally off the wall
and the other catch.......you need a referral to see this particular doctor or that particular doctor.........drives me totally off the wall
Amen. Alleluia.
Perhaps the point is that benefit providers (private and government alike) are being handed permission to reject payment for costly MS treatment except in cases where a significant burden of diagnostic proof can be met.
PS - note: The medicalxpress article is about a study published online by the medical journal Neurology on Wednesday, 5/9/12. That STUDY is said to be based on a SURVEY done at Oregon Health & Science University and the Portland Veterans Affairs Medical Center. The Oregonian (the daily newspaper of Portland, Oregon) published the OHSU/VA survey on Thursday, 5/10/12 - a day after the online Neurology publication date.
Night now.
Mary
Perhaps the point is that benefit providers (private and government alike) are being handed permission to reject payment for costly MS treatment except in cases where a significant burden of diagnostic proof can be met.
PS - note: The medicalxpress article is about a study published online by the medical journal Neurology on Wednesday, 5/9/12. That STUDY is said to be based on a SURVEY done at Oregon Health & Science University and the Portland Veterans Affairs Medical Center. The Oregonian (the daily newspaper of Portland, Oregon) published the OHSU/VA survey on Thursday, 5/10/12 - a day after the online Neurology publication date.
Night now.
Mary
COMMUNITY LEADER
Oh wow this just gets better and better, lol someone correct me if i'm reading this incorrectly but in my mind, with the oregonlive.com article linking a previous study to this one, Oregon IS making or implying that mental health is the more likely cause of a MS misdiagnosis.
What i always find mind boggling is that follow up on patients suspected of being misdiagnosed is never done, I seriously want to see this done with all these opinon based research projects. Not only for research benefits but to the benefit of doctors world wide, who make these statements to patients, collegues and research but do not ever find out if they are correct.
Why is a neurologists opinion on other medical conditions just automatically assumed to be accurate here, its got to be insulting for other medical professionals who find their 'expert' opinion irrelivant if its not supportive of the neuro's opinion, or not even consulted. lol even 'conversion disorder' dx only has 1/3 accuracy in suspected dx and these suspected CDers are being refered by neurologists in a lot of cases, so who's 'opinion' is right when its outside their feild of expertise?
Ok i do have a bug in my bonnet, there is nothing like a (general) neurologist going on and on about mental health and dismissing relivant testing and your entire life history, medical and mental health because he's pissed off at you for failing your neuro tests and his (wrong) opinion isn't being supported by the clinical evidence. lol but aside from a personal history that still bites when i'm not laughing my self silly over it, how exactly does this help anyone, neurologist or patients?
We've got the MS research that states DMD's should be RX early, proof that MRI's dont show full MS story, clinical evidence is damage already done and waiting for it to show isn't in the patients best interest so recommedations for DMD's with CIS. What does this study actually accomplish, maybe more neuro's will be holding back treatment options or dismissing patients that dont have enough evidence for them to dx, just what does it do for patients, nothing potentially good that i can fathom!
Did you know that parents are 87% more acurate at identifying Gifted than teachers, teachers are the common research educational expert opinion and when those that teachers identified as gifted are tested their opinion was correct around 15% of the time. Point being you can have an opinion but unless its backed up with appropriate testing, it holds little to no meaning. In my head this opinion based study is basically the same.
Cheers........JJ
What i always find mind boggling is that follow up on patients suspected of being misdiagnosed is never done, I seriously want to see this done with all these opinon based research projects. Not only for research benefits but to the benefit of doctors world wide, who make these statements to patients, collegues and research but do not ever find out if they are correct.
Why is a neurologists opinion on other medical conditions just automatically assumed to be accurate here, its got to be insulting for other medical professionals who find their 'expert' opinion irrelivant if its not supportive of the neuro's opinion, or not even consulted. lol even 'conversion disorder' dx only has 1/3 accuracy in suspected dx and these suspected CDers are being refered by neurologists in a lot of cases, so who's 'opinion' is right when its outside their feild of expertise?
Ok i do have a bug in my bonnet, there is nothing like a (general) neurologist going on and on about mental health and dismissing relivant testing and your entire life history, medical and mental health because he's pissed off at you for failing your neuro tests and his (wrong) opinion isn't being supported by the clinical evidence. lol but aside from a personal history that still bites when i'm not laughing my self silly over it, how exactly does this help anyone, neurologist or patients?
We've got the MS research that states DMD's should be RX early, proof that MRI's dont show full MS story, clinical evidence is damage already done and waiting for it to show isn't in the patients best interest so recommedations for DMD's with CIS. What does this study actually accomplish, maybe more neuro's will be holding back treatment options or dismissing patients that dont have enough evidence for them to dx, just what does it do for patients, nothing potentially good that i can fathom!
Did you know that parents are 87% more acurate at identifying Gifted than teachers, teachers are the common research educational expert opinion and when those that teachers identified as gifted are tested their opinion was correct around 15% of the time. Point being you can have an opinion but unless its backed up with appropriate testing, it holds little to no meaning. In my head this opinion based study is basically the same.
Cheers........JJ
Thanks JJ for saving me the time and effort of composing the same basic thoughts you expressed on this one. It sounds like more of the usual to me - - - Doctors thinking it is enough to pronounce that patients do - or don't - have MS.
What kind of doctor says, “This isn’t MS. Let me show you the exit.”
What kind says, “You have MS. Let me know which drug you want me to prescribe.”
Where are the physician members of the patient CARE team who are interested in relentless investigation to identify whatever else might be causing an individual's symptoms and debility? And who is developing a standard for reliable evaluation and differentiation of the multitude of inflammatory autoimmune disorders?
Yes, doctors misdiagnose. Sometimes they say it is MS when it isn't. Sometimes they say it isn't MS when it is. They disagree with each other. They even change their minds about their own declarations. It’s a frustrating mess and uncertainty is going to exist until there is fuller knowledge of what we call MS and/or a definitive diagnostic tool.
I fully support second opinions but many here have had far more than that and still can’t shake their questions and doubts - diagnosed (with anything) or not. In my observation, most people passing through here are looking for just one competent physician they can count on to listen, hear and care. They know all that is necessary will flow from there.
OK, guess I ended up finding a thing or two to say after all.
Stupid studies.
Mary
What kind of doctor says, “This isn’t MS. Let me show you the exit.”
What kind says, “You have MS. Let me know which drug you want me to prescribe.”
Where are the physician members of the patient CARE team who are interested in relentless investigation to identify whatever else might be causing an individual's symptoms and debility? And who is developing a standard for reliable evaluation and differentiation of the multitude of inflammatory autoimmune disorders?
Yes, doctors misdiagnose. Sometimes they say it is MS when it isn't. Sometimes they say it isn't MS when it is. They disagree with each other. They even change their minds about their own declarations. It’s a frustrating mess and uncertainty is going to exist until there is fuller knowledge of what we call MS and/or a definitive diagnostic tool.
I fully support second opinions but many here have had far more than that and still can’t shake their questions and doubts - diagnosed (with anything) or not. In my observation, most people passing through here are looking for just one competent physician they can count on to listen, hear and care. They know all that is necessary will flow from there.
OK, guess I ended up finding a thing or two to say after all.
Stupid studies.
Mary
thanks TLC for adding that link. It helps to fill in some of the details from the other post I cited
so tempted to cut/paste and print this and send it to a couple of "you know who " neurologists I used to support financially
While I trust my doctor, I know he is human and fallible- just like me. I am somewhat more confident than I once was, in my diagnosis- given there is a small team of professionals working to help me. I hope I am not taking all the wrong meds, but only time will tell.
Take care everyone.
Tammy
Take care everyone.
Tammy
There's a related story in The Oregonian this morning:
http://www.oregonlive.com/health/index.ssf/2012/05/insight_into_why_hundreds_of_p.html
http://www.oregonlive.com/health/index.ssf/2012/05/insight_into_why_hundreds_of_p.html
One thing that seems missing is clarification of "other medical providers". It seems much more likely that if the dx was provided by a dermatologist, it's more likely to be incorrect. For me this just underlines the importance of seeing qualified MS docs.
Kyle
Kyle
As frustrating as this has been for our family and Jordan, in the end I agree (can't believe I said it!LOL!!). I do not want them to dx with MS if they aren't 100% sure it is because then they will stop looking for other reasons and explanations. I also don't want MS treatments if it isn't MS (so many side effects possibly). Even though I don't like not knowing, I am glad they are being slow and continuing to gather the needed information and evidence. Thanks-I really needed to read this.
oops - hit post too quickly.
And, wanted to add, it would be uncommon for someone to be dx'd with 100% MS simply because there is no "1" test that captures the disease and it's a clinical dx.
So, indeed when docs are doing their very best to identify a process,in the context of MS, there is always that chance something reveals itselft at a later time, thus misdx being discovered well after treatment has begun.
On one hand I think this can be interpreted as a disservice to the work of good docs who are willing to treat what they feel ultimately is MS, and also to those who never close the book completely even after MS because of potential mimics.
.
And, wanted to add, it would be uncommon for someone to be dx'd with 100% MS simply because there is no "1" test that captures the disease and it's a clinical dx.
So, indeed when docs are doing their very best to identify a process,in the context of MS, there is always that chance something reveals itselft at a later time, thus misdx being discovered well after treatment has begun.
On one hand I think this can be interpreted as a disservice to the work of good docs who are willing to treat what they feel ultimately is MS, and also to those who never close the book completely even after MS because of potential mimics.
.
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