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Lies My Neuro Told Me or (Common MS Myths)
I know the title is inflammatory toward doctors, but it is catchy and I want you to read this. I don't usually believe that neuros give misinformation to us, but I believe that a neurologist who presumes to diagnose or treat MS should be up on the current medical literature. Some of these "opinions" which are given to us as gospel are things for which the good doctors should know better!
1) You Have to be 25 years old and female to get MS.
Yes, some us have been told such outrageous things. The age of onset of MS has been found to be between 18 months and 70-some years of age. The average age of diagnosis is just over 35. The classic range is, indeed, between 20 and 40, but the doctor that stops there is an idiot. Below the age of 50, women outnumber men, but the ratio is not heavy like in, say, lupus. I believe that it is close to 3:1. In Late-Onset MS (onset after the age of 50) men and women are represented almost equally (something like 1.5:1)
2) All people with MS have Optic Neuritis at the beginning of the disease.
Patently false, though it is a common presenting symptom and about 80% will have ON at sometime during their illness. Actually, this number may be higher, but we will look at that in the HP on Optic Neuritis.
3) There is no pain in MS.
Arrgh! This is a statement by someone who has not read the literature, but only the Cliff's Notes written by a preschooler. This doctor also has never taken care of people with MS and PAID ATTENTION! The people in his/her care have had their pain dismissed due to other causes. MS has many serious causes of pain. Trigeminal neuralgia is more common in MSers than in the general population. TN has been called the "Suicide Pain". Also, there are other painful neuralgias, radicular pain, as if there was a pinched nerve, new onset of headaches, a huge proportion of MSers have back and neck pain. Spasticity is common and spasticity can have unrelenting and very difficult-to-treat pain. Seriously painful spasms are widely experienced.
4) Depression in MS is due to stress.
Simply said, MS often causes depression PRIMARILY. A major depressive episode should be viewed as an MS attack and counted toward diagnosis rather than used as a reason to send a limbolander off the the psychiatrist.
5) All brain MRI spots are due to aging - no matter what the person's age.
Good data shows that only about 30% of 60-year-olds have age-related spots and it drops with age.
6) You have to have 9 Lesions in order to have MS.
This is so patently stupid that one should run, lurch, hobble or roll away from that doctor as fast as possible. MS can exist - if not be diagnosed - with NO MRI lesions. With the proper history and physical findings even one lesion can make the diagnosis. Two lesions are a little better, but there is not much increase in the number with 3 or more. Thus, you don't have a higher chance of having MS if you have lots of lesions over just having two - if you have had at least 2 clinical attacks and have at least one clinical neurologic abnormality.
The need to have 9 or more lesions is a small part of the McDonald criteria that is used only if the person hasn't had enough attacks or abnormalities on neuro exam. These doctors are uneducable.
7) "You have too few lesions"
See above
8) "You have too many lesions"
what?
9) You aren't getting worse because your neruo exam hasn't changed.
This is a toughy, but the neuro exam is limited in how sensitive it is to small changes. The best neuros are pretty good at getting repeatable results on their exams, but still cannot measure those fine points that we, who are living in our bodies and experiencing something, can be very sure of. A few recent studies have called to our MS doctors to put more stock into our reports. Also remember that the severity of our disease can vary day to day and even hour to hour. We may see the doc on a good day that does not represent our changing norm.
10) You don't need DMD's if your symptoms are mild.
A favorite position of the Mayo Clinic, but one that has been debunked by all of the ongoing studies of the four DMDs. The meds work better the earlier they are used in our disease.
11) Lack of symptoms means the disease is halted.
We know that this disease usually progresses in the background, despite a lack of relapses. Our disease is not merely equal to the relapses we are having.
Well, these were the ones I remembered just now. I invite comment and other submissions. These will become a Helath Page.
Quix
1) You Have to be 25 years old and female to get MS.
Yes, some us have been told such outrageous things. The age of onset of MS has been found to be between 18 months and 70-some years of age. The average age of diagnosis is just over 35. The classic range is, indeed, between 20 and 40, but the doctor that stops there is an idiot. Below the age of 50, women outnumber men, but the ratio is not heavy like in, say, lupus. I believe that it is close to 3:1. In Late-Onset MS (onset after the age of 50) men and women are represented almost equally (something like 1.5:1)
2) All people with MS have Optic Neuritis at the beginning of the disease.
Patently false, though it is a common presenting symptom and about 80% will have ON at sometime during their illness. Actually, this number may be higher, but we will look at that in the HP on Optic Neuritis.
3) There is no pain in MS.
Arrgh! This is a statement by someone who has not read the literature, but only the Cliff's Notes written by a preschooler. This doctor also has never taken care of people with MS and PAID ATTENTION! The people in his/her care have had their pain dismissed due to other causes. MS has many serious causes of pain. Trigeminal neuralgia is more common in MSers than in the general population. TN has been called the "Suicide Pain". Also, there are other painful neuralgias, radicular pain, as if there was a pinched nerve, new onset of headaches, a huge proportion of MSers have back and neck pain. Spasticity is common and spasticity can have unrelenting and very difficult-to-treat pain. Seriously painful spasms are widely experienced.
4) Depression in MS is due to stress.
Simply said, MS often causes depression PRIMARILY. A major depressive episode should be viewed as an MS attack and counted toward diagnosis rather than used as a reason to send a limbolander off the the psychiatrist.
5) All brain MRI spots are due to aging - no matter what the person's age.
Good data shows that only about 30% of 60-year-olds have age-related spots and it drops with age.
6) You have to have 9 Lesions in order to have MS.
This is so patently stupid that one should run, lurch, hobble or roll away from that doctor as fast as possible. MS can exist - if not be diagnosed - with NO MRI lesions. With the proper history and physical findings even one lesion can make the diagnosis. Two lesions are a little better, but there is not much increase in the number with 3 or more. Thus, you don't have a higher chance of having MS if you have lots of lesions over just having two - if you have had at least 2 clinical attacks and have at least one clinical neurologic abnormality.
The need to have 9 or more lesions is a small part of the McDonald criteria that is used only if the person hasn't had enough attacks or abnormalities on neuro exam. These doctors are uneducable.
7) "You have too few lesions"
See above
8) "You have too many lesions"
what?
9) You aren't getting worse because your neruo exam hasn't changed.
This is a toughy, but the neuro exam is limited in how sensitive it is to small changes. The best neuros are pretty good at getting repeatable results on their exams, but still cannot measure those fine points that we, who are living in our bodies and experiencing something, can be very sure of. A few recent studies have called to our MS doctors to put more stock into our reports. Also remember that the severity of our disease can vary day to day and even hour to hour. We may see the doc on a good day that does not represent our changing norm.
10) You don't need DMD's if your symptoms are mild.
A favorite position of the Mayo Clinic, but one that has been debunked by all of the ongoing studies of the four DMDs. The meds work better the earlier they are used in our disease.
11) Lack of symptoms means the disease is halted.
We know that this disease usually progresses in the background, despite a lack of relapses. Our disease is not merely equal to the relapses we are having.
Well, these were the ones I remembered just now. I invite comment and other submissions. These will become a Helath Page.
Quix
hip hip hooray for Doc Q!!
I've heard those "opinions" given gospel over the last 23+ years enough times to just about drive a person insane with frustration and anger.
Enough so that I now see a psych to help me manage the anger and frustration and how to deal with a unspecified "demyelinating disease of the CNS". mind you, "unspecified" comes from the VA, not non-VA neuros.
over the years, the doctors would say there is no objective data but your symptoms are real to you. there was no objective data because they wouldn't look for it. however, since objective data has been seen finally, my historical symptoms now don't meet the criteria for MS. you read that right! anything, and i mean any tiny item that isn't picture perfect for a diagnosis they grab for whenever objective data is found. they can drag this on until i die, just like the VA did with the ALS patient fiasco.
i would say more but there is no reason to as the above is plenty to drive the point home to this family of online MS'ers and to show i'm on the same page as the mighty Doc Q with this thread.
I was sure close to the end of my rope with mind numbing mystery symptoms and the brush-off from doctors when i found this forum. It sure has helped to re-plenish/energize my confidence and that confidence was mighty thirsty too.
and this thread started by Doc Q is just the medicine i needed today! whew!
I've heard those "opinions" given gospel over the last 23+ years enough times to just about drive a person insane with frustration and anger.
Enough so that I now see a psych to help me manage the anger and frustration and how to deal with a unspecified "demyelinating disease of the CNS". mind you, "unspecified" comes from the VA, not non-VA neuros.
over the years, the doctors would say there is no objective data but your symptoms are real to you. there was no objective data because they wouldn't look for it. however, since objective data has been seen finally, my historical symptoms now don't meet the criteria for MS. you read that right! anything, and i mean any tiny item that isn't picture perfect for a diagnosis they grab for whenever objective data is found. they can drag this on until i die, just like the VA did with the ALS patient fiasco.
i would say more but there is no reason to as the above is plenty to drive the point home to this family of online MS'ers and to show i'm on the same page as the mighty Doc Q with this thread.
I was sure close to the end of my rope with mind numbing mystery symptoms and the brush-off from doctors when i found this forum. It sure has helped to re-plenish/energize my confidence and that confidence was mighty thirsty too.
and this thread started by Doc Q is just the medicine i needed today! whew!
Thanks Quix, this will make a great health page. It's really great to see you back on the forum!!!!
I, as you already know, was sent packing because I didn't have any lesions showing on my MRI, done on a 1.5T, of the brain and CSpine. I've never even had an MRI of the TSpine.
My neuro stated that if I didn't have any lesions showing in the brain or Cspine that it couldn't be MS. Also said that I wouldn't still be walking if my symptoms were caused by MS, because I had been having them for too long. I pretty much knew then that I was probably out of luck with this neuro.
I have recently met with a new PCP who was appalled that with my symptoms that the treating neuro didn't give me a clinical dx during my first visit. This made me feel better in some ways, but sad in others.
While I continue to deteriorate, like so many others in limboland, I guess it just all boils down to being lucky enough to find a good neuro who thinks on his feet and REALLY knows the symptoms of MS, and is willing to step up and dx, without every single criteria having been met.
Maybe one day, the criteria will meet a human level and more MS sufferers can start their DMD sooner and slow the progress of this monster.
doni
I, as you already know, was sent packing because I didn't have any lesions showing on my MRI, done on a 1.5T, of the brain and CSpine. I've never even had an MRI of the TSpine.
My neuro stated that if I didn't have any lesions showing in the brain or Cspine that it couldn't be MS. Also said that I wouldn't still be walking if my symptoms were caused by MS, because I had been having them for too long. I pretty much knew then that I was probably out of luck with this neuro.
I have recently met with a new PCP who was appalled that with my symptoms that the treating neuro didn't give me a clinical dx during my first visit. This made me feel better in some ways, but sad in others.
While I continue to deteriorate, like so many others in limboland, I guess it just all boils down to being lucky enough to find a good neuro who thinks on his feet and REALLY knows the symptoms of MS, and is willing to step up and dx, without every single criteria having been met.
Maybe one day, the criteria will meet a human level and more MS sufferers can start their DMD sooner and slow the progress of this monster.
doni
AND ON....
20) MS symptoms always occur in particular order.
If so, no one told MS! This is poppycock! The ways that MS can show up are truly infinite. It is true that some symptoms are more common (like visual symptoms, dizziness, numbness and tingling, weakness), but to think that it progresses in a specific manner is so outrageous as to show that this doctor HAS NO CLUE what MS looks like and is not only icapable of diagnosing it, but also of treating it. Can we all say "Tiddly Winks" in unison?
21) MS lesions are always "classic" in appearance and location.
Not true. These doctors are rigid thinkers and either do not know that MS can present or progress atypically or they have never read any of the literature. Escape them while you are still mobile. This includes what the radiologist might call "nonspecific" lesions. While you may not be able to say that they are definitely due to MS you also CANNOT say that they are NOT due to MS.
22) If there are no new lesions then you can't be having a relapse.
These doctors worship the MRI as though it were a god itself. We also call them lesion counters. They should read the MOST BASIC literature regarding the diagnosis of MS. A relapse is defined by SYMPTOMS - not the MRI. Sheesh!!
23) If there isn't a lesion to match the symptom then the symptom cannot be due to MS.
Oh, go catch that slimy, gray thing before it escapes completely and forever!! Of course, not all symptoms that we have will be due to MS. But, if the symptom is neurological (Like Rena's face pain) then either it is due to MS, or there is another neuro disease lurking (unlikely) or they believe the patient is lying. (what?) Either way they are incapable of caring for MS.
24) Yes, your IQ has declined significantly (or your leg has shrunk enormously, or your strength is way down) but it is still "within normal limits" so there is no problem.
what? (see instructions above for escaping)
25) From a neuro, "I don't need to read my own MRIs"
And you say you are board-certified? IMHO, this is a neurologist who is too dumb or too lazy to be taking care of or diagnosing MS. Interpreting MRIs is part of the job-description. With this there is no one to give the often needed second opinion to the radiologist.
26) If you have had MS for this long you would have more lesions.
see #7 above.
27) If your MRI hasn't changed in _____ months/years, then you do not have MS.
MS marches to no one's drummer. It progresses as it does. We have had people here have MS removed from consideration because of no change in the MRI in some length of time. We have also seen several who have had their diagnosis TAKEN AWAY because the MRI is unchanged. (One of them was on a DMD!!!) While a long-stable MRI may be a reason to revisit the history, physical and rule out process, it alone does not constitute reason to discard MS.
How long can it remain unchanged? I can find no answer to that. I have seen case reports where it was unchanged for several years, yet it was clear the patient had MS. Mine has been pretty much stable for the last five years - though 2 1/2 were on a DMD. No one is challenging my diagnosis - yet.
A common myth seems to be that if the MRI is unchanged a few months after the first then MS is off the table. These guys are missing the rationale for waiting 3-6 months and repeating the MRI when the diagnosis is unclear. IF THE MRI SHOWS NEW LESIONS then there is strong evidence for MS. The reverse is NOT true. If it stays the same then you just don't have more evidence - not that MS is ruled out.
How come we can read the literature and all of this is so clear? I can only conclude that these are the guys who left the CME meeting for the TW tournament.
Thoughts?
Quix
20) MS symptoms always occur in particular order.
If so, no one told MS! This is poppycock! The ways that MS can show up are truly infinite. It is true that some symptoms are more common (like visual symptoms, dizziness, numbness and tingling, weakness), but to think that it progresses in a specific manner is so outrageous as to show that this doctor HAS NO CLUE what MS looks like and is not only icapable of diagnosing it, but also of treating it. Can we all say "Tiddly Winks" in unison?
21) MS lesions are always "classic" in appearance and location.
Not true. These doctors are rigid thinkers and either do not know that MS can present or progress atypically or they have never read any of the literature. Escape them while you are still mobile. This includes what the radiologist might call "nonspecific" lesions. While you may not be able to say that they are definitely due to MS you also CANNOT say that they are NOT due to MS.
22) If there are no new lesions then you can't be having a relapse.
These doctors worship the MRI as though it were a god itself. We also call them lesion counters. They should read the MOST BASIC literature regarding the diagnosis of MS. A relapse is defined by SYMPTOMS - not the MRI. Sheesh!!
23) If there isn't a lesion to match the symptom then the symptom cannot be due to MS.
Oh, go catch that slimy, gray thing before it escapes completely and forever!! Of course, not all symptoms that we have will be due to MS. But, if the symptom is neurological (Like Rena's face pain) then either it is due to MS, or there is another neuro disease lurking (unlikely) or they believe the patient is lying. (what?) Either way they are incapable of caring for MS.
24) Yes, your IQ has declined significantly (or your leg has shrunk enormously, or your strength is way down) but it is still "within normal limits" so there is no problem.
what? (see instructions above for escaping)
25) From a neuro, "I don't need to read my own MRIs"
And you say you are board-certified? IMHO, this is a neurologist who is too dumb or too lazy to be taking care of or diagnosing MS. Interpreting MRIs is part of the job-description. With this there is no one to give the often needed second opinion to the radiologist.
26) If you have had MS for this long you would have more lesions.
see #7 above.
27) If your MRI hasn't changed in _____ months/years, then you do not have MS.
MS marches to no one's drummer. It progresses as it does. We have had people here have MS removed from consideration because of no change in the MRI in some length of time. We have also seen several who have had their diagnosis TAKEN AWAY because the MRI is unchanged. (One of them was on a DMD!!!) While a long-stable MRI may be a reason to revisit the history, physical and rule out process, it alone does not constitute reason to discard MS.
How long can it remain unchanged? I can find no answer to that. I have seen case reports where it was unchanged for several years, yet it was clear the patient had MS. Mine has been pretty much stable for the last five years - though 2 1/2 were on a DMD. No one is challenging my diagnosis - yet.
A common myth seems to be that if the MRI is unchanged a few months after the first then MS is off the table. These guys are missing the rationale for waiting 3-6 months and repeating the MRI when the diagnosis is unclear. IF THE MRI SHOWS NEW LESIONS then there is strong evidence for MS. The reverse is NOT true. If it stays the same then you just don't have more evidence - not that MS is ruled out.
How come we can read the literature and all of this is so clear? I can only conclude that these are the guys who left the CME meeting for the TW tournament.
Thoughts?
Quix
"If it was MS, you would have more noticeable weakness. Let me know if you can't hold a cup of coffee or your keys."
"You can't bring on sx of MS [ala l'Hermetes] they only come on their own."
To be fair, this was a neurological nurse practitioner that I had originally gone to for what I thought was bad migraine (turned out to be TN and occipital neuralgia). She did note my hyper-reflexia and a few other CNS sx, but just felt sure it wasn't MS. As nice as she was, I knew I needed to see a neuro who knew at least as much about MS as I do... :)
"You can't bring on sx of MS [ala l'Hermetes] they only come on their own."
To be fair, this was a neurological nurse practitioner that I had originally gone to for what I thought was bad migraine (turned out to be TN and occipital neuralgia). She did note my hyper-reflexia and a few other CNS sx, but just felt sure it wasn't MS. As nice as she was, I knew I needed to see a neuro who knew at least as much about MS as I do... :)
COMMUNITY LEADER
So when is your book coming out??? HINT HINT!!!!!
I did think of another one that I seem to get, not so sure if its just me or others are getting a version of this one too. Does size matter with MS?
No wonder your so fatigued your too thin/ anorexic you just need to eat more/better/healthier
OR the alternative
No wonder your so fatigued your too over weight/ obese you just need to eat less/better/healthier
I think i've also been told my fatigue is from not exercising enough and from exercising too much all in the same dr visit, fatigue seems to be something hard to understand unless you've experienced it. I've also been told i dont get enough sleep and i sleep too much, still cant get an explanation for why i can run up 20 flights of stairs and during an epidsode i cant walk the 5 steps to the loo, let alone in time.
The 'blooper' my GP came up with was "you dont have ANY symptoms of MS!" hmmmm what medical text book has she been reading?
Cheers........JJ
PS. You are a legend!
PPS. Oh how old do you have to be before dr's stop saying "good girl?" lol
I did think of another one that I seem to get, not so sure if its just me or others are getting a version of this one too. Does size matter with MS?
No wonder your so fatigued your too thin/ anorexic you just need to eat more/better/healthier
OR the alternative
No wonder your so fatigued your too over weight/ obese you just need to eat less/better/healthier
I think i've also been told my fatigue is from not exercising enough and from exercising too much all in the same dr visit, fatigue seems to be something hard to understand unless you've experienced it. I've also been told i dont get enough sleep and i sleep too much, still cant get an explanation for why i can run up 20 flights of stairs and during an epidsode i cant walk the 5 steps to the loo, let alone in time.
The 'blooper' my GP came up with was "you dont have ANY symptoms of MS!" hmmmm what medical text book has she been reading?
Cheers........JJ
PS. You are a legend!
PPS. Oh how old do you have to be before dr's stop saying "good girl?" lol
Great post which will make a great HP. Here's a new one for you that I haven't seen on the forum.
The day I was dx as my neuro was deliberating on my sx and tests, he commented that there had not been 'that many new lesions in te last 5 years'. I asked him if lesions could come and go over time and his reply was 'no of course not we can clearly see the ones you had 5 years ago on the new MRI'.
At this he pointed to the largest lesion which was still there but with more ragged edges than years ago.
Comments welcome
Pat
The day I was dx as my neuro was deliberating on my sx and tests, he commented that there had not been 'that many new lesions in te last 5 years'. I asked him if lesions could come and go over time and his reply was 'no of course not we can clearly see the ones you had 5 years ago on the new MRI'.
At this he pointed to the largest lesion which was still there but with more ragged edges than years ago.
Comments welcome
Pat
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