Note - I had this compiled for well over a year from Q's notes and your submissions, and came across it again tonight. It's time to stop waiting and get it posted. Read 'em and weap. -Lulu
Lies My Neuro Told Me: Common Myths About MS
These myths are important for both people with the diagnosis and those not yet diagnosed. If you have the disease and your doctor does not understand how variable it is, you may have symptoms ignored because they "weren't on the list" of things that doctor remembers, like "there is no pain in MS." People who have MS as yet undiagnosed will be shown the front door for a variety of bogus reasons. In the end it doesn't matter if the doctor is uneducated in the disease, or if (s)he is lazy and doesn't care - we won't get the care we need.
These are presented in no particular order, and all have been uttered by neurologists to members of our MedHelp community. Read them and weep, scream, and laugh out loud.
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, and a huge proportion of MSers have back and neck pain. Spasticity is common and 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 to 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"
8) "You have too many lesions"
9) You aren't getting worse because your neuro exam hasn't changed.
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 on 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 Disease Modifying Drugs (DMD) 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 earlier these meds are used in treating our disease, the better they work.
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.
12) Even though you have the history of relapses, the abnormal neuro exam findings and lesions on the MRI, we need to "wait and see what happens next."
What? Are we waiting for the other arm to fall off?
Many of us have encountered Dr. On-The-Fence. These guys are not confident of their abilities or are just lazy. Yes, there are times when the data is just not there, but the McDonald Criteria are NOT that hard. If the rule-outs have been thoroughly looked at then the diagnosis can be made even though the presentation or MRI appearance may be atypical. MS does have more classic presentations usually, but the number of atypical presentations is NOT rare. GROW SOME, okay?!!!
13) We sent you for an MRI to look for lesions and WE FOUND SOME! But these are due to something else.
14) Early in the process the neuro says - "Oh, lots of people have that."
If the statement is made instead of doing the proper exam and work up, then the doc is a lazy dufus and we need to make our way to the door. We need our docs to listen to us, look at us and think about us. Early dismissal of symptoms or problems is unacceptable.
15) This is all due to stress/anxiety
Give me a break! We have all, at one time or another, had a lot of stress and we know how we react. Somehow, it has gotten into doc's heads that stress can cause almost every known symptom, and it does so with great frequency. "Due to stress" is a diagnosis of exclusion and, when handed out early, is the product of a dull, lazy or mediocre mind.
Yes, there are people with true Health Anxiety (Hypochondriacs). They usually know who they are and that they overreact to small symptoms. This is a different discussion.
16) This is a Conversion Disorder
It takes too much to even scratch the surface of why this one is a cheap way out for the neuro and should be called a flagrant foul. For the detailed explanation, read Sammy’s explanation at
17) "This symptom is real, but this other one is caused by a migraine and these two are due to stress. Your brain lesions are due to your age"
Beware of the doctor that blithely dismisses all the problems of a patient with an assortment of explanations. When you went to see this doctor you might have almost tripped over a gray, slimy thing scurrying down the hall. This was his brain trying to make a break for it.
Good, tight medical thinking tries hard to answer all of a patient's problems, exam findings and test results with a single diagnosis. While this isn't always possible, it keeps the docs from assigning different diagnoses to each problem.
18) "You're just getting older."
OMG!!! People do not lose it just because they had they 40th birthday, or 50th, or typically, even their 60th. Don't get me started.
20) Your LP was negative so you can't have MS.
The lumbar puncture, also known as a spinal tap, neither proves nor disproves the existence of MS in our body. Approximately 15% of all people with a negative LP do have MS.
21) 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 incapable of diagnosing it, but also of treating it. Can we all say "Tiddly Winks" in unison?
22) MS lesions are always "classic" in appearance and location.
23) 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!!
24) 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.
25) 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)
26) 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.
27) If you have had MS for this long you would have more lesions.
see #7 above.
28) We repeated your MRI in 3, 6, 12 (whatever) months to see if it changed. It didn't therefore you don't have MS.
When the MRI shows more lesions, or healing of a lesion it provides additional evidence for the diagnosis of MS. However, if the MRI hasn't changed, we can't say anything about the likelihood of MS. Lack of change does not provide any good evidence "against" the diagnosis.
29) Lesions can't disappear in MS
Oh, Puppypoop! Lesions come and lesions go, but mostly they come. Of course there is healing of the myelin in MS. This is well-known and well-documented. It is this nature of lesions appearing and a few disappearing that is so characteristic of MS and less so of other MS mimics.
30) If your brain MRI is clear then you don't have MS and we don't need to look further.
About 25% of people with MS have lesions ONLY in the spinal cord. The official recommendations for using the MRI in diagnosing MS state that if the history and or physical is suggestive for MS and brain MRI is clear or non-diagnostic (not enough evidence to make a diagnosis) then the spinal cord should be imaged. In my case I only had one measly (but classic) lesion in my brain MRI, but had six in my spinal cord which clinched my diagnosis. Many MS neuros recommend doing both brain and spine initially.
Because far fewer diseases cause lesions in the spinal cord, a lesion there is of great importance. People who are denied a spine MRI in the face of suggestive symptoms and physical findings have a dunce for a neurologist.
31) You have lesions because you drank or smoked.
It is true and has been shown that smoking is a risk factor in developing MS. This has been shown conclusively. So, any doctor that dismisses MS because the lesions are "due to smoking" (doubtful) ISN'T thinking the problem through. (Oh, he of the escaping brain) The smoking, earlier or currently has made MS more likely. Smoking also may cause the MS to progress more rapidly.
32) You can't do anything to bring on the symptoms of MS.
Say what? Someone's slimy, gray thing got away! Ummm...let me count the ways. 1) Flex your neck to elicit L'Hermittes, 2) exercise to bring on general and localized fatigue and symptoms, 2) hot environments to bring out a cornucopia of neurological problems especially, 3) drink alcohol to bring on otherwise mild vertigo symptoms, 4) stand close to a busy street to have your vision go wonky, 5) Get an immunization or an infection. This guy apparently never heard of Uhthoff's Phenomenon. Sheesh! Really?
33) The length of time you have had MS will correlate with the number of lesions you have. Therefore, if you have a lot of lesions and a short history of symptoms it can’t be MS and conversely if you don't have many lesions, but have a long history of symptoms, then it also can't be MS.
This is patently ridiculous! There are innumerable reports of a person having the first symptoms of MS and immediately being found with a brain full of lesions. Then there are also the people who have a decade or more of symptoms and few lesions. There often is NO correlation between number of lesions and length of symptoms.
34) MS is an MRI diagnosis.
Wrong! Wrong! and WRONG!! MS is a diagnosis of symptoms that suggest demyelination, combined with a neuro exam that shows multiple areas of damage in the central nervous system. If all other reasonable explanations are ruled out, the MRI is only needed to provide confirmatory evidence. If the history and physical don't have all the needed evidence then the MC allow the doctor to use the MRI to provide some of the missing evidence.
Some researchers are attempting to find the right pattern of MRI findings that will allow doc's to diagnose MS on the basis of the MRI. I find this scary. The more that we focus on this, the more docs will be tempted to ignore our symptoms and physical exam in favor of doing a simple MRI. Doing this allows great harm to be done by assuming that the MRI process will always show every bit of damage that is occurring in a patient's central nervous system, that the MRI will always be perfectly and completely interpreted, and that all reports will always be a reflection of everything that is seen. Alas, this will all only be true when human beings become perfect.
35) The McDonald Criteria dictate the number and locations of lesions that are needed to diagnose MS.
This may be one of the biggest myths out there. The McDonald Criteria, in fact, were NOT developed to diagnose every case! They were developed to aid our doctors when the clincial picture wasn't enough. Yes, a classic MRI can certainly raise the suspicion of MS very high in a neurologist's mind, but the minimally postive MRI can also give enough evidence that - when combined with enough evidence in the history and physical - to make the diagnosis of MS the only reasonable answer.
If you look at the very first scenario listed in the McDonald Criteria it shows that MS can be diagnosed on the weight of the history and neuro exam alone if the mimics have been well-ruled out. It would be desirable in that case to do an MRI to gain some confirmatory evidence. The McDonald Criteria do NOT state that the additional MRI data is mandatory. How much evidence is needed from the MRI if the history and physical show enough? One or two lesions is sufficient. Let me repeat that. If a person has two or more clear attacks and two or more distinct abnormalities on exam, then one or two MRI lesions is enough to clinch the diagnosis. (again provided the rule-out process was thorough)
36) In MS you acquire 5 lesions per year and this rule can be used to determine whether or not you have MS.
Man I cringed just writing that! This rule goes onto the list in honor of WAF finding this week's biggest Loser.
37) You are stressed because you have children and that is why you have progressive neurologic symptoms.
LA gets this honor, but so many others have been told this. Since all mothers have children, then all mothers are too stressed. Because of that so many mothers have neurologic symptoms that we should be inundated with disabled mothers. By analysis, then, no mothers (who are all stressed because they have children) can have MS.
38) Your eye exam is normal so you don't have optic neuritis.
Actually we hear this one all the time and most recently from a neuro-ophthalmologist (in name only!). When the ophtho looks in the eye one of the things he is looking for is an abnormal optic disc. The optic disc is the circle seen and is where the optic nerve enters the back of the eye to spread out around the retina.
In many cases of optic neuritis - inflammation from an attack on the myelin of the optic nerve - the optic disc becomes pale. This paleness represents loss of nerve fibers within the optic nerve. It is one of the classic signs of optic neuritis. HOWEVER.....(you knew this was coming, didn't you?) in people with confirmed optic neuritis the disc will show changes ONLY 60% OF THE TIME OR LESS. That means that almost two thirds of people with known optic neuritis will show changes. This information is ALL OVER the medical literature. How come some eye specialists don't know it?? Come on! This is basic stuff.
Other tests that can confirm the presence of optic neuritis if the optic disc looks normal are an MRI focused on the optic nerve, a VEP, visual field testing and OCT (optic coherence tomography).
39) You are on a medication to suppress a symptom. Since the symptom is suppressed, you are better and no longer have a neurological problem.
Too many of us have been told that since we are on a medication that helps a symptom, then that symptom no longer qualifies as a problem. In my case the carbamazepine suppressed the pain from my Trigeminal Neuralgia. These docs would then say that I "don't have TN" so that doesn't count as a symptom of MS. That is just too DUMB and weird to comment on!
40) These are only sensory problems and, thus, they don't count as an attack or they are not serious or they just are not important.
41) It is impossible to have MS if you already have another neurological disease.
Hmmm...this could only be said by a doctor whose brain made a break for it long ago. Does this dimwit actually believe that one disorder is protective against another?? Of course, having two or more problems that affect the nervous system is the height of bad luck, we how neat that would be if we all had an allotment of "one" and that would be it.
Until someone proves that having the gene for Neurofibromatosis or some other genetically transmitted gene actually did make it physiologically impossible for MS to occur, our doctors must keep their minds open when new symptoms occur that are not readily explained by our pre-existing condition. Hey! This would be a new "pre-existing condition clause" in the McDonald Criteria.
Uniformly on this forum we have seen that the worst neurologists were those that omitted or ignored or disbelieved the history, did a haphazard exam (or none at all) or who relied solely on the radiologist's report for their MRI assessment. MS will be most accurately diagnosed by the doctor who follows his/her training and who listens to the patient, who looks thoroughly at the patient, who thinks the differential diagnosis through and does a thorough rule-out and who uses the MRI as a very useful tool to glean more evidence.
I have said it a hundred times and will say it again. All of us must have a physician who LISTENS to us, LOOKS at us carefully, and who THINKS about all of the evidence that is available.
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