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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
OK. I wasn't accusing you. There have been several posts about how folks deal with their docs. I was trying to see what was going on. If your appointment started that way and continued, then something is very off. Your provider should be acting more professionally.
You might consider contacting your insurance company (directly or through your employer) and let them know that "your case seems to be frustrating your provider." They can alway choose to send you to another provider.
Bob
You might consider contacting your insurance company (directly or through your employer) and let them know that "your case seems to be frustrating your provider." They can alway choose to send you to another provider.
Bob
Thank you Bob for your input. I understand about being professional and act accordingly with my Doctors. And I don't and didn't cry at the appointment. She was the one who was barking at me. I had a written down some things I wanted to talk to the Neruologist about but she didn't want to talk about my recent symptoms. I understand that they have a difficult job, but I am not trying to be a problem. I told her that the foot pain may not be related at all to the recent symptoms, just wanted to let her know what was happening. She did put down on my MRI form to check for demylinating disease, so I hope to get some answers. I am not a doctor, nor am I trying to diagnose myself, hence the Doctor appointments. My insurance is limited and I don't have any other Neurologist that I can see. Perhaps she was having a bad morning. I guess my case frustrates her. She just keeps telling me that there is no cause for my foot pain that she can determine. I don't like to take pain meds like tramadol (they make me sick) so only take them rarely. I have come to grips with having constant pain, but now with these current symptoms, I am barely able to function on some days. I can't lose my job, that would be very bad indeed. Anyway, just wanted to clarify that I don't ***** at my Doctor and am cooperative. If an opportunity to change insurance comes up, will probably do so if I can choose my Doctors.
What other service professional (contractor, hairdresser, mechanic) would you allow to "Yell at you?" Now, in the same breath, you can't cry at your contractor or mechanic (not sure about hairdressers,) You have to approach this as a professional cooperative exchange (a health care negotiation.) Most doctors want you/us to get better or to halt the disease process (a win/win negotiation.) Even the ones that don't act too bright. We have to play by the rules of their profession. What have we ruled out? What is left to rule out? What is the next test? If they diagnosed idiopathic peripheral neuropathy, do you have an abnormal test to back it up? Peripheral nerve biopsy? Something. What is to prove that your loss of sensation is peripheral? What points to it have no know cause (idiopathic?) Like in my day to day job, you have to take emotion (including frustration) out of the discussion.
I really think that if we make a chart of what it isn't and what had been proven, we will get more done, Remember that your symptoms are subjective and the doctor can't see them, We have to describe them and they have to test to see clinical signs. Anyone who diagnosis idiopathic anything right off the bat without testing, is taking a short-cut and they deserve to be called on it.
Read back through how we describe "symptoms." Maybe we should write up a description of tests and the relevant clinical signs. I really rhing that the docs look at the test results (LP, VEP, MRI) It is something they "trust" and can stand behind. Symptoms are another issue. I also think that many of us have symptoms well ahead of any visible lesions on the MRI. Yep, neurologists are rushed. Their are not enough of them and there is a lot of neurologic disease out there thanks to heavy metals, our use of organophosphates (something else that need to be ruled out with neuropathies,) etc.
Try and find a doctor that wants to cooperate and make the patient part of the heath care team. Just my two cents worth.
Bob
I really think that if we make a chart of what it isn't and what had been proven, we will get more done, Remember that your symptoms are subjective and the doctor can't see them, We have to describe them and they have to test to see clinical signs. Anyone who diagnosis idiopathic anything right off the bat without testing, is taking a short-cut and they deserve to be called on it.
Read back through how we describe "symptoms." Maybe we should write up a description of tests and the relevant clinical signs. I really rhing that the docs look at the test results (LP, VEP, MRI) It is something they "trust" and can stand behind. Symptoms are another issue. I also think that many of us have symptoms well ahead of any visible lesions on the MRI. Yep, neurologists are rushed. Their are not enough of them and there is a lot of neurologic disease out there thanks to heavy metals, our use of organophosphates (something else that need to be ruled out with neuropathies,) etc.
Try and find a doctor that wants to cooperate and make the patient part of the heath care team. Just my two cents worth.
Bob
Sorry, I mean't to say that I could "not" a straight line heel to toe. See, even my typing is off. My symptoms are fatigue, MS hug (that just happened last week and was really weird!), numbness, pain in legs, memory issues, dizziness, balance problems, weak legs and sometimes arms, headaches (stabbing, cluster), blurred vision, eye pain and vibrating eyes (back & forth), my sense of taste and smell became "off", shocking pain in neck. I have been battling severe foot pain which I have been told is idiopathic peripheral neuropathy for 2 years. Now all these symptoms hitting me in a 2 week time frame. And I am not diabetic, I have had so many diabetes tests, it isn't funny. While I don't want MS, I really hope to find out what this all is and not be yelled at by my Doctor.
Ok, so after reading this wonderful post, I can understand why alot of docs. will give the run around on giving a dx. I know that with the McDonald Criteria you basically need to have two attacks seperated at different times and have an abnormal finding on a neuro. exam.
As my doc. stated to me, I have a clear MRI, which as some have pointed out, people have had lesions show, but the docs. claim are not enough for ms. Could my neuro. possibly have withheld info from me because maybe their weren't enough lesions? Or because I smoke?
I say this because, I have had an abnormal neuro exam, (hyperreflexia) . I have had three episodes of speech slurring lasting up to two weeks, seperated by two years and the last one was 11 months later. I have had, all of the eye symptoms that go along with ms, double vision, optic neuropathy, and nystagmus.
I have had face pain, stiffness and cramping.
Dizziness for 8 months, tremors, fatigue, vibrating foot, twitching muscles, word finding, noise intolerance, depression.
And, about 9 years ago,, I could not lift my legs up except using my hands.
I think my docs. need to re-read my list and stop misdiagnosing me.
I believe they are lying most of the time to keep their waiting room moving along.
I was also told that if I have MS, I would have more symptoms that are permanent,,,
well if that's true,, would my eye problem with the optic nerve be considered that, because its permanent??
Sorry for blabbing on and on, this post had me thinking,
As my doc. stated to me, I have a clear MRI, which as some have pointed out, people have had lesions show, but the docs. claim are not enough for ms. Could my neuro. possibly have withheld info from me because maybe their weren't enough lesions? Or because I smoke?
I say this because, I have had an abnormal neuro exam, (hyperreflexia) . I have had three episodes of speech slurring lasting up to two weeks, seperated by two years and the last one was 11 months later. I have had, all of the eye symptoms that go along with ms, double vision, optic neuropathy, and nystagmus.
I have had face pain, stiffness and cramping.
Dizziness for 8 months, tremors, fatigue, vibrating foot, twitching muscles, word finding, noise intolerance, depression.
And, about 9 years ago,, I could not lift my legs up except using my hands.
I think my docs. need to re-read my list and stop misdiagnosing me.
I believe they are lying most of the time to keep their waiting room moving along.
I was also told that if I have MS, I would have more symptoms that are permanent,,,
well if that's true,, would my eye problem with the optic nerve be considered that, because its permanent??
Sorry for blabbing on and on, this post had me thinking,
Thank you for making me feel like I am not crazy. My current neuro got mad at me this last visit as I "had too many symptoms" and they weren't in the right category, whatever that means. She also barked at me because I could walk a straight line heel to toe. Told me I wasn't concentrating. I am going to be getting a Brain MRI soon but not holding my breath as I imagine if something shows up, it will be explained away. I am not faking my symptoms and I just want to cry now. I so appreciate everyone's postings here, I don't feel so alone anymore.
CindyLou
CindyLou
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