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History of the Diagnosis of MS
What are the Rules for Diagnosing Multiple Sclerosis?
First, you need to understand that MS always was, AND STILL IS, mainly a clinical diagnosis. Many neurologists forget this, though.
The definition of “Clinical Diagnosis” is: A diagnosis that can be made on the basis of the history and the physical exam alone.
First, a short history of the diagnosis of MS. The words, Multiple Sclerosis, means “Many Scars.” Before many tests were available for it, it was diagnosed by it’s characteristics. Mainly the appearance and resolution of attacks of neurological symptoms, that over time, resulted in a disabling condition. People had more than one appearance of the disease and it always affected more than one part of, or system in, the body. Doctors knew that, eventually when the patient died, they would find the evidence of “multiple scars” when the brain was examined. They knew that transient attacks of blindness and eye pain were often a part, as were diffuse & varied paresthesias, muscle weakness and spasticity. They knew of the fatigue and the intolerance to heat. In fact, a Dr. named Uhthoff described being able to reproduce symptoms of this disease, specifically blindness, by placing the person in a tub of hot water. This was a major diagnostic test used until two or three decades ago. The “Uhthoff Phenomenon" is often now referred to as the reproduction of ANY symptom on exposure to heat. (And we can attest to that!)
So, basically doctors had to use their own judgment in making the diagnosis. They both diagnosed people who didn’t have it and, obviously missed people who did. It made little difference because there was no treatment to change the course of the disease. Especially the milder forms of the disease often escaped diagnosis and the worst were usually picked up. Thus, the disease appeared to be far worse than it really was, because the world saw mainly the most disabled with the diagnosis of MS. It’s reputation was that of a death sentence and it was feared like leprosy!
In 1965 the first attempt was made to provide doctors with structure in making the diagnosis of MS, called the Schumacher Criteria. It was actually very simple. The patient needs to have evidence of what is called “Dissemination (or spread) of the disease BOTH in “Time” (6 months or more) and of Dissemination of symptoms in Space” (there needs to be damage in more than one part of the body, which means also in different areas of the brain/spinal cord). This simply means evidence of more than one attack and evidence that the CNS has been injured in more than one place. This requirement for definite diagnosis remains today.
There were other criteria. One was an age range (now outdated) of the disease occurring between 10 and 50 years. Another was objective neurologic findings on physical exam. These two were looser. One could substitute for the other.
The final criterion is one that has continued to the present. It is important! There must be no better or reasonable explanation for the symptoms. This made the diagnosis of Multiple Sclerosis also a DIAGNOSIS OF EXCLUSION. You have to exclude other possible causes for the patient’s symptoms and findings.
By 1983, there had been a great explosion in the capability to use the laboratory and imaging techniques to diagnose neurological disease. The Poser Criteria kept the original notion of Dissemination in Time and Space, but allowed for the use of the available tests to document new lesions that might not have expressed themselves in symptoms.
Some of these tests were:
CSF protein, CSF IgG studies and oligoclonal bands
MRI and neuroimaging
evoked potentials
The Poser Criteria categorized MS into four categories that we still hear today - on the forums and from neurologists who have not kept up with current thinking and research. These categories were: Clinically Definite, Clinically Probable, Laboratory-Supported Clinically Definite, and Laboratory-Supported Clinically Probable. These criteria were good for research purposes, but were not for determining prognosis, they gave no help in advising patients about what lay before them, there was no agreement on exactly how to interpret the MRI’s, and there was no way to use them to diagnose Primary Progressive MS.
Stay tuned for the (in)famous McDonald Criteria of 2001!
First, you need to understand that MS always was, AND STILL IS, mainly a clinical diagnosis. Many neurologists forget this, though.
The definition of “Clinical Diagnosis” is: A diagnosis that can be made on the basis of the history and the physical exam alone.
First, a short history of the diagnosis of MS. The words, Multiple Sclerosis, means “Many Scars.” Before many tests were available for it, it was diagnosed by it’s characteristics. Mainly the appearance and resolution of attacks of neurological symptoms, that over time, resulted in a disabling condition. People had more than one appearance of the disease and it always affected more than one part of, or system in, the body. Doctors knew that, eventually when the patient died, they would find the evidence of “multiple scars” when the brain was examined. They knew that transient attacks of blindness and eye pain were often a part, as were diffuse & varied paresthesias, muscle weakness and spasticity. They knew of the fatigue and the intolerance to heat. In fact, a Dr. named Uhthoff described being able to reproduce symptoms of this disease, specifically blindness, by placing the person in a tub of hot water. This was a major diagnostic test used until two or three decades ago. The “Uhthoff Phenomenon" is often now referred to as the reproduction of ANY symptom on exposure to heat. (And we can attest to that!)
So, basically doctors had to use their own judgment in making the diagnosis. They both diagnosed people who didn’t have it and, obviously missed people who did. It made little difference because there was no treatment to change the course of the disease. Especially the milder forms of the disease often escaped diagnosis and the worst were usually picked up. Thus, the disease appeared to be far worse than it really was, because the world saw mainly the most disabled with the diagnosis of MS. It’s reputation was that of a death sentence and it was feared like leprosy!
In 1965 the first attempt was made to provide doctors with structure in making the diagnosis of MS, called the Schumacher Criteria. It was actually very simple. The patient needs to have evidence of what is called “Dissemination (or spread) of the disease BOTH in “Time” (6 months or more) and of Dissemination of symptoms in Space” (there needs to be damage in more than one part of the body, which means also in different areas of the brain/spinal cord). This simply means evidence of more than one attack and evidence that the CNS has been injured in more than one place. This requirement for definite diagnosis remains today.
There were other criteria. One was an age range (now outdated) of the disease occurring between 10 and 50 years. Another was objective neurologic findings on physical exam. These two were looser. One could substitute for the other.
The final criterion is one that has continued to the present. It is important! There must be no better or reasonable explanation for the symptoms. This made the diagnosis of Multiple Sclerosis also a DIAGNOSIS OF EXCLUSION. You have to exclude other possible causes for the patient’s symptoms and findings.
By 1983, there had been a great explosion in the capability to use the laboratory and imaging techniques to diagnose neurological disease. The Poser Criteria kept the original notion of Dissemination in Time and Space, but allowed for the use of the available tests to document new lesions that might not have expressed themselves in symptoms.
Some of these tests were:
CSF protein, CSF IgG studies and oligoclonal bands
MRI and neuroimaging
evoked potentials
The Poser Criteria categorized MS into four categories that we still hear today - on the forums and from neurologists who have not kept up with current thinking and research. These categories were: Clinically Definite, Clinically Probable, Laboratory-Supported Clinically Definite, and Laboratory-Supported Clinically Probable. These criteria were good for research purposes, but were not for determining prognosis, they gave no help in advising patients about what lay before them, there was no agreement on exactly how to interpret the MRI’s, and there was no way to use them to diagnose Primary Progressive MS.
Stay tuned for the (in)famous McDonald Criteria of 2001!
Just a helpful hint~
This really is not the best thread to post a question on. It's more an informative "epic" as we like to call them for everyone to learn from.
If you'd like to ask a question (and we'd LOVE to seeand answer it!), the best thing to do is to start a new thread. Go to the top of this page and click the blue "Post a Question" tab above the current thread in the upper left.
Waiting to hear from you!
Zilla*
This really is not the best thread to post a question on. It's more an informative "epic" as we like to call them for everyone to learn from.
If you'd like to ask a question (and we'd LOVE to seeand answer it!), the best thing to do is to start a new thread. Go to the top of this page and click the blue "Post a Question" tab above the current thread in the upper left.
Waiting to hear from you!
Zilla*
This is such a wonderful right up. I have a question I am not sure on. Does this mean that if all of your tests come back negative you can still have MS? Jo
Thanks,
You mentioned eye pain in the article. I notice often that my eye, the one that went blind, often hurts in back like it did when I lost most of my sight in that eye.
Is this something I should be concerned with?
You mentioned eye pain in the article. I notice often that my eye, the one that went blind, often hurts in back like it did when I lost most of my sight in that eye.
Is this something I should be concerned with?
ok im trying to understand this....
So if i had an epsode in the summer when symptoms were the worst but as the months go by i have lots of better days yet still have some minor symptoms daily??????? would that be common????
I know im a little slow.... im the one bugging you about my mri w/numerous foci deep white matter in sub cortal both hemispheres of cerebrum????
but vep test were all fine...........
Thanks for breaking the dx down for us...
Cheryl.. cherby
So if i had an epsode in the summer when symptoms were the worst but as the months go by i have lots of better days yet still have some minor symptoms daily??????? would that be common????
I know im a little slow.... im the one bugging you about my mri w/numerous foci deep white matter in sub cortal both hemispheres of cerebrum????
but vep test were all fine...........
Thanks for breaking the dx down for us...
Cheryl.. cherby
Wow! My initial dx was clinical MS. My GP named it as such, but have not found a Neuro that "believes in that stuff". It gives me hope and I, probably like so many other frustrated people, need real hope. Thanks for taking the time to write this. I saw myself in your writing. Thank heaven for your input!
mr wiggles
mr wiggles
It is really kind of you to spend your time giving us those information. I am really lost when the time I came here. And your words giving me a big hug and make me think that hope is still here.
Thanks! Thanks! A hundred times......!
Vera
Thanks! Thanks! A hundred times......!
Vera
thanks lots i found all you were talking about!!!!!! ya i have been eyeing Quixs messages on the fourm. all here are lucky to have her. also she lives so close to me , I live in vancouver wash, I no she is having the major mouth face nerve painsssss. i also get, and hoping to talk to her soon.
got to get my fanny to bed for sure now.
thanks again Denise61
got to get my fanny to bed for sure now.
thanks again Denise61
Great write up Quix i will have to bump this up its great, you certainly put the work in, especially helpful for people like me whom are undiagnosed and trying to get the understanding, and get my head around things, you put so much in for others, youre the best and i look forward to taking the time in reading your other write ups welldone
David.
David.
This is recommended reading just to understand some of the references we make in discussing the diagnosis of MS.
Quix
Quix
Thank you for taking so much time to help all of thos who need this. You are a very giving person and I hope everyone else can see this too. I really don't know what we would do without you here. At least I don't.
Thank you
Carol
Thank you
Carol
VERY GOOD stuff Quix,
Yes, if nothing else is taken from you very informative piece; MS is a Clinical Diagnosis!
btw,
one of the Neuros mentioned,,, one of the 2 authors, who describe what we use today? RRMS, PPMS,,etc
One of those doctors is/was my doctor...He clinically diagnosed me (with MRI in hand, and said spinal aren't the end all for a MS diagnosis!!!!
again thankfully, I was in the hands of a VERY fine Neuro,, and never got a spinal).
So, if any out there think I'm a lunatic, quack with a sub-par Neuro....thankfully Quix you helped me win my case.. :)
he just never mentioned LD..to me.. ? ? ? ? ?
Yes, if nothing else is taken from you very informative piece; MS is a Clinical Diagnosis!
btw,
one of the Neuros mentioned,,, one of the 2 authors, who describe what we use today? RRMS, PPMS,,etc
One of those doctors is/was my doctor...He clinically diagnosed me (with MRI in hand, and said spinal aren't the end all for a MS diagnosis!!!!
again thankfully, I was in the hands of a VERY fine Neuro,, and never got a spinal).
So, if any out there think I'm a lunatic, quack with a sub-par Neuro....thankfully Quix you helped me win my case.. :)
he just never mentioned LD..to me.. ? ? ? ? ?
Very nicely done!!!!!!!!!!!!
Quix thanks for the time you put into this,this will help many understand the DX process.
Quix thanks for the time you put into this,this will help many understand the DX process.
This is a very informative article you have written. THANKS! It will help those who are waiting to be diagnosed. Wanted to let you know, I ordered my Copaxone this past friday. Should get it in a week or so. Karina
Development of the Categories of MS
In 1996 an international panel worked to make the diagnosis of Multiple Sclerosis more relevant to the patients with it and the doctors treating it. By this time the first of the Disease Modifying Therapies were in use and more were being studied. Coming up with the diagnosis was clearer, but what doctors really needed to know was who would benefit - or not - from these new medications.
The results were published in 1996 and the two main authors were Lublin, F, MD and Reingold, S., MD. They described the four categories of multiple sclerosis we use today.
RELAPSING REMITTING MS - 85% of people fall into this category at the onset of their disease
*** A Relapse is defined as an appearance of new symptoms or a worsening of old symptoms, lasting at least 48 hours in the absence of fever. It is not associated with the withdrawal of steroids (some people’s symptoms are quieted by steroids only to rebound back and worse when the steroids are stopped). The Relapse must be preceded by a period of clinical stability lasting at least a month.
*** In RRMS relapses occur with full or partial recovery and there is disease/symptom stability between attacks.
SECONDARY PROGRESSIVE MS - 50% of people with RRMS will convert to SPMS over time.
*** This form begins with Relapsing Remitting MS, but after time there is no period of stability.
*** May still have relapses, but symptoms will get worse or progress between relapses.
PRIMARY PROGRESSIVE MS - 15% of people with MS will have this form
*** Symptoms of MS begin gradually and slowly worsen over time.
*** There may be some stable periods.
*** Often difficult to diagnose
*** Limited Treatment Options
PROGRESSIVE RELAPSING MS - Occurs in 5% of people with MS, or one third of those with Primary Progressive MS will convert into PRMS.
*** Primary Progressive onset followed by one or more relapses later in disease.
In 1996 an international panel worked to make the diagnosis of Multiple Sclerosis more relevant to the patients with it and the doctors treating it. By this time the first of the Disease Modifying Therapies were in use and more were being studied. Coming up with the diagnosis was clearer, but what doctors really needed to know was who would benefit - or not - from these new medications.
The results were published in 1996 and the two main authors were Lublin, F, MD and Reingold, S., MD. They described the four categories of multiple sclerosis we use today.
RELAPSING REMITTING MS - 85% of people fall into this category at the onset of their disease
*** A Relapse is defined as an appearance of new symptoms or a worsening of old symptoms, lasting at least 48 hours in the absence of fever. It is not associated with the withdrawal of steroids (some people’s symptoms are quieted by steroids only to rebound back and worse when the steroids are stopped). The Relapse must be preceded by a period of clinical stability lasting at least a month.
*** In RRMS relapses occur with full or partial recovery and there is disease/symptom stability between attacks.
SECONDARY PROGRESSIVE MS - 50% of people with RRMS will convert to SPMS over time.
*** This form begins with Relapsing Remitting MS, but after time there is no period of stability.
*** May still have relapses, but symptoms will get worse or progress between relapses.
PRIMARY PROGRESSIVE MS - 15% of people with MS will have this form
*** Symptoms of MS begin gradually and slowly worsen over time.
*** There may be some stable periods.
*** Often difficult to diagnose
*** Limited Treatment Options
PROGRESSIVE RELAPSING MS - Occurs in 5% of people with MS, or one third of those with Primary Progressive MS will convert into PRMS.
*** Primary Progressive onset followed by one or more relapses later in disease.
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