The McDonald Criteria
 

THE MCDONALD CRITERIA (revised 2005)

(The Myth of the 9 lesions)[/SIZE]


APPROACH TO THE DIAGNOSIS OF MS



First, you need to understand that MS always was, AND STILL IS, mainly a clinical diagnosis. The definition of “Clinical Diagnosis” is:

A diagnosis that can be made on the basis of the history and the physical exam alone.


Yes, that means that in some cases, the diagnosis of MS can be made without using the MRI or other test at all. It would be unusual for this to happen, but it points out clearly the need for a thorough history and physical at the beginning of the diagnostic process. Many of the clues to the disease will already be there. In countries where MRIs are available, they are always obtained. Unfortunately, in practice, the results of the MRI often overshadow the "clinical" findings from the patient's history and the neurological exam, especially if the MRI is negative or atypical. According the guidelines of diagnosis, this MRI would not have to be positive in order for the neurologist to be confident the person has MS. However, it takes a smart and very self-assured neurologist, usually an MS Specialist, to diagnose MS with a normal MRI. It does happen, though.

The categories of MS are also based solely on the patient's experience, that is, their history of symptoms, of resolution, and of accumulation of disability. The categories are discussed more fully in another Health Page (see "Categories of MS"). These are Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS), Primary Progressive MS (PPMS), and Progressive Relapsing MS (PRMS). About 85% of people with MS will have the Relapsing Remitting form. For this reason, physicians begin looking a patient with suspected MS from the standpoint of attacks and remissions.

What is an Attack?

An attack (relapse, flair, exacerbation) of MS is the appearance of new neurological symptoms or the worsening of old neurological symptoms of the kind that are seen in MS. It may be a combination of old and new symptoms. An attack may be documented from the report of the patient. In this case it is "subjective". Or it may be observed by the doctor (as in discovering a new problem on the neuro exam), though usually it is a combination of the two. Anything problem observed by the doctor is said to be "objective." An attack must last at least 24 hours.

An attack does not include a pseudoattack, which is the temporary worsening of symptoms that can occur elevation of the body's core temperature (as with fever or overheating). It also does not include single paroxysmal events (sudden jerks, brief loss of vision, single spasms of a muscle, a single bout of dizziness). If the single event occurs mutliple times over a period of more than 24 hours it would qualify as an attack. As noted above an attack often does include more than one symptom.

How Often Can Attacks Occur?

The time between attacks must be at least 30 days, during which the symptoms improve, resolve, or are stable in their intensity. So, a second attack must be at least 30 days from the day the first attack began to improve or stabilized. An attack may not be the immediate improvement seen after a course of steroids. This period between attacks is called a remission. Clinically, a patient with RRMS is always either in an attack or in a remission.


THE IMPORTANCE OF THE HISTORY AND NEUROLOGIC EXAM

So, you can see that the whole diagnostic process must begin with a thorough history from the patient of their symptoms, when they started, how they progressed, whether they improved and how much they improved, and whether they ever returned. It must look for a pattern of waxing and waning of symptoms, noting when new symptoms appeared. The physician must put together a timeline of the patient's complaints and symptoms looking for a pattern of "Relapse and Remission." The history should include the things that make symptoms worse or improve them, the pattern of symptoms severity with respect to time of day, level of exercise, temperature, and whether the symptoms became worse after things like infections, pregnancy, severe life stressors, or overexertion. It should be complete in other respects including non-neurological symptoms and events especially just preceding any attacks.

The patient's Family History should be noted with respect to neurological illnesses, including MS, and for signs of MS Mimics in other members of the family. It is imperative that the neurologist pay close attention and devote time to hearing what the patient can offer. No patient should be comfortable with a doctor that does not take this time in one way or another.

The neurological exam is just as important! It should be a thorough exam, that takes a good amount of time. It should cover multiples tests in each part of the neurological system. It is a head to toe exam, and done well, can be exhausting and may take an hour or more to perform. It should cover the multitude of tests of the face muscles and eye movements. There is also a thorough check of the major muscle groups through the body comparing one side to the other for symmetry. There should be checks for balance and coordination. There should be some testing of the sensation throughout the body using 2 or more tests of sharp/dull, soft touch, hot/cold, vibration, two-point discrimination and joint/ position sense. The doctor should observe the patient walking a good distance (more than the 4 steps across the exam room), walking on the toes and on the heels. Finally, several tendon reflexes should be checked and compared side to side.

During the neurological exam the doctor is looking for "clinical lesions." A clinical lesion is an abnormality on the exam that is objective evidence that there is damage in the nervous system. Examples of "clinical lesions" are 1) hyperactive reflexes which show that there is damage in the spinal cord, 2) problems with the muscles that move the eyes indicating a problem in the brainstem, 3) spasticity, usually also from the spinal cord, 4) positive Babinksi or Hoffman's test, and 7) paleness of the optic disc at the back of the eye. These are just a few of many dozens that can found on MS patients.

Please note that the word "lesion" is used in two different ways throughoutt discussions of MS. There are "clinical lesions" as described above. These are areas of the CNS that must be damaged in order to cause the problems seen in the body. There are also the "MRI lesions" which are the abnormalities "seen" on the MRI images. The two are not always the same. One can have a clinical lesion that does not show up on the MRI. There can also be white spots on the MRI that don't appear to have a symptom associated with them.

So, it becomes clear that the neurologist must listen to and exam the patient carefully at some point early in the diagnostic process before making any judgment on the diagnosis. The first clues about whether this is MS, a mimic or something else will come from this process. Be wary of the neurologist who skips these steps.



THE MCDONALD CRITERIA

What is the Neurologist Looking For?

The actual terms used by MS Specialists in describing the diagnostic characteristics of MS are Dissemination in Space, Dissemination in Time, and the Exlcusion of Any Better Explanation for the patient's symptoms and findings. This section is going to define these terms and others that are used in the McDonald Criteria.

Dissemination in Space - This means that there is evidence that the disease has attacked more than one area of the Central Nervous System. The disease has "spread out" in its location.

Dissemination in Time - This means that there have been attacks on the Central Nervous System on more than one occasion, and that the subsequent attack was in at least one different spot than the first attack. The disease has spread out in time. (It has been active more than once.) The attacks must have occurred at least 30 days apart.

Exclusion of Better Explanations - To do this the neurologist will order many blood tests looking for MS mimics, such as causes of autoimmune vasculitis, CNS infections like Lyme Disease and syphillis, blood clotting disorders like Hughes Syndrome, deficiencies, and heavy metal poisoning. Also other tests may be done like an EEG, sleep study, EMG, and Nerve Conduction Studies.

The McDonald Criteria - 2001

In 2001, a new set of diagnostic criteria were proposed and accepted by the MS world of doctors and researchers. The McDonald criteria were very good, in that, for the first time they described criteria for the diagnosis of Primary Progressive MS. But, they also allowed for the definitive diagnosis of MS in it’s earliest form (often called the Clinically Isolated Syndrome), when there had been only one “attack” or onset of one symptom. The diagnosis of these two situations requires real thought and documented abnormalities on the lab and imaging tests. These criteria were superior to earlier diagnostic guides in that they were better at picking the MS cases accurately and eliminating the non-MS cases.

For the first time, neurologists could use the information from MRIs to substitute for an attack or for more evidence of clinical lesions when the clinical history and exam was not enough to show a pattern of the spread of the disease in time and space. This allowed many people to be diagnosed earlier. In the last 10 years, MRI has become more and more important in the diagnosis of MS. The problem is that some neurologists have come to rely solely on the MRI results and may neglect the patient's history and physical almost completely. As you examine the McDonald Criteria, you will see that the Criteria never intended that the MRI assume the first and only role.

By theMcDonald Criteria, patients fall into one of three categories: Definite MS, Possible MS and Not MS. The “type of MS” (RRMS, SPMS, etc) is determined after diagnosis and is based almost entirely on the patient's clinical course.

There were problems, though, in the practical use of the McDonald Criteria. The MRI criteria were very stringent and difficult to figure out. Also, new techniques in MRI imaging made visualizing spinal lesions easier. It was clear that spinal lesions needed a larger role in the diagnosis.



The Revised MCDONALD CRITERIA (2005)

In 2005, a group of MS specialists reconsidered the original criteria, loosened some of the MRI requirements, changed the role of the results of CSF testing and VEP in the diagnosis of PPMS, and increased the importance of spinal MRI lesions. These changes have been shown to be as good or better at picking up patients with MS and in excluding patients who do not have it.

Below are definitions used in the criteria and a chart summarizing the revised criteria. After the chart is a text description in more detail about the different scenarios a neurologist finds.

Table: here


DEFINITIONS

What Provides MRI Evidence of "Dissemination in Space"?

This is the description of a postive MRI for the purposes of showing that there has been "dissemination in space." This would be needed if there is only evidence on neurologic exam of one clinical lesion, that is there is only one abnormality that points directly to a damaged area in the CNS. This is also where the misunderstanding about always needing 9 lesions on the MRI. (Sometimes you do, but not always.) In general lesions should be larger than 3mm in cross-section.



To show Dissemination in Space on the MRI:

You need to have 3 of the following 4 things:

*** 1 (one) contrast-enhancing lesion of the brain or spinal cord. If no enhancing lesion, then need 9 T2 hyperintense lesions in brain or spine.

*** 1 infratentorial lesion or a cord lesion (this means under the tentorium, which is the membrane on which the larger cerebrum sits. Below the tentorium is the cerebellum, brainstem and spinal cord.)

*** 1 (one) or more juxtacortical lesions (this involves nerve fibers - called U-fibers - that extend from the white matter in the subcortical area through the thin boundary with the cortex of the gray matter)

*** 3 or more periventricular lesions (these are lesions sitting adjacent or very close to the ventricles)


note: Individual cord lesions can substitute along with individual brain lesions to reach the required number of T2 lesions.


What Provides MRI Evidence of "Dissemination in Time"?

1) A Contrast-Enhancing (therefore, new) MRI lesion seen in a scan done at least 3 months after the onset of the first attack and at a site that is different from the site of the inital clinical attack. (an example would be: first attack was with Optic Neuritis. 3 months later there is an enhancing lesion in the frontal lobe)

OR

2) A new T2 lesion detected in a scan done at any time compared to an earlier scan. The earlier scan must have been done at least 30 days after the beginning of the first clinical attack.



What is a Positive CSF (Spinal fluid) Result?

Two or more unique oligoclonal bands found in the CSF, but not in the serum OR an elevated IgG Index


What is a Positive VEP?

A delayed optic nerve signal (usually longer than 115msec), but a well-preserved wave form

A text description of the Criteria in action is next.

What Does the Chart Say in Real Words?

The neurologist is usually faced with one of several situations because patients arrive in various stages of their first symptoms. The neuro must begin looking at each patient with an analysis of the patients history of symptoms. He is looking for a pattern of attacks and remissions. As you have seen above he must do a thorough neurologic exam to look for clinical lesions. Ideally the patient would have seen a physician for each attack he has had, but this often is not the case. Then the picture becomes much murkier.



Each scenario below assumes that all other reasonable expalnations for the patient's problems has been ruled out. They are listed by ease of making the diagnosis.

First scenario


2 attacks
2 clinical lesions

The patient has had 2 or more attacks by history, with a clearcut remission between at least two of them. A doctor has found different neurologic abnormalities during at least 2 attacks. In order to make the diagnosis, no further evidence is really needed! In reality this rarely happens. It is recommended to get an MRI for further documentation and as a baseline. The dilemma occurs when the MRI is normal or very atypical. It takes a very confident neurologist to make the diagnosis at this point. This is the topic of a huge amount of discussion on the forum.



2nd Scenario


2 attacks
1 clinical lesion

The patient has had 2 or more clear-cut clinical attacks, by history, separated by remission. The doctor has found only one clinical lesion, that is one neurologic abnormality that can only be due to damage in the CNS. This same lesion may be found during both attacks. What the doctor knows is that there is "dissemination in time," because there have been two attacks. What is lacking to make the diagnosis is evidence of dissemination in space, because only one part of the CNS can so far be shown to be affected. An example of this is two attacks and the only abnormality each time is optic neuritis in the same eye. Dissemination in space can be determined one of in three ways


1) a Positive MRI for Space requirement (see definition above)


OR


2) 2 or more MRI lesions that appear consistent with MS in addition to Positive CSF findings (see above)


OR


3) The doctor can "wait and see" until the patient has a new attack with evidence that a new part of the brain or cord is damaged.


3rd Scenario

1 attack
2 clinical lesions

This patient has had only 1 clear attack and shows 2 abnormalities on neurologic exam that are consistent with MS. So, there is evidence that the disease has attacked more than one distinct part of the central nervous system, so we're okay on Dissemination in Space. There is no evidence that the disease has disseminated in time. This situation qualifies for the term Clinically Isolated Syndrome with a Multifocal Presentation. This person would qualify for early DMDs at this point, but most neurologists would want to see "2 or more MRI lesions" (this is not part of the Criteria) as well before they made the decision to start early meds. To establish the diagnosis of Definite MS, the doctor would have to wait for one of two things to happen:

1) Positive MRI for Time requirement (see above)

OR

2) "Wait and see" for a second clinical attack. Remember that, for the purposes of the Criteria, an attack must include objective evidence of damage.


4th Scenario

1 attack
1 clinical lesion

The patient has had only one clinical attack. The doctor finds clinical evidence of 1 lesion on the neurologic exam. This is also called a Clinically Isolated Syndrome, with a Monosymptomatic presentation. In order to make a diagnosis of Definite MS, the doctor must find evidence that there is both dissemination of space of the disease AND must also find evidence that there has been dissemination in time. The MRI and the LP become very important in this case, because there is no pattern yet of Relapsing and Remitting.

Note: At this point the patient has a Clinically Isolated Syndrome with a monosymptomatic presentation. The decision to treat early with DMDs may be made here without a Definite Diagnosis.

Dissemination in Space can be shown by;

1) Positive MRI (see definition above for (Space)

OR

2) 2 or more MRI-detected lesions consistent with MS in addition to Positive CSF results (see above)


Dissemination in Time can be shown by:

1) Positive MRI ( acording to the chart above for Time)

OR

2) The doctor can "wait and see" for the patient to have a second clinical attack

Note: At this point with both time and space requirements fulfilled the patient can be diagnosed with Definite MS. Note that quite a bit of time may need to pass (sometimes many years) before both of the requirements above is taken care of.



5th Scenario

Insidious neurological progression of symptoms and signs suggestive of MS

These patients present the hardest case for the doctor. They do not have the clear-cut attacks and remissions of the RRMS patients, so their history looks much like other chronic neurologic diseases. The doctor must rely on long-term deterioration and accummulation of disability. In this case spinal lesions and a positive CSF become more important. In fact, the two of them together can substitute for brain lesions completely. In PPMS the majority of the disease is often found in the spinal cord. But the spinal fluid does not have to be positive as it was required to be by the first McDonald Criteria. This is in acknowledgement that there seems to be less inflammatory disease in PPMS, thus less of a tendency to form inflammatory antibodies (O-Bands) The diagnostic requirements for PPMS are:

*** One year of disease progression. This can be done looking back at the patient's history, or by following the patient for a year and observing progression, or a combination of both.

AND

*** 2 out of the 3 following requirements:

1) Positive Brain MRI - this would consist of 9 T2 lesions or (4 or more T2 lesions + Positive VEP)

2) Positive Spinal cord MRI with 2 or more focal T2 lesions

3) Positive CSF (either +Oligoclonal Bands or +IgG Index)


SUMMARY

Diagnosis is often an art, and doctors vary in their skill, their interpretation, their curiosity and their creativity. It is clear that MS can be daunting to diagnose. But, the process needed to begin the diagnosis is very clear. The neurologist must take a thorough history and physical, doing what is possible to make a timeline of the appearance of symptoms and their course. He/She must insert the observed "clinical lesions" into this timeline and make a judgment of whether the requirement that a disease has shown both dissemination in space and in time. From there he is ready to assess the MRI and decide which supporting tests need to be done and which tests will help add evidence in cases that are atypical and do not fit nicely into the patterns above.


Quixotic1

Hmmmm.. Too long? Too wordy?? Not Clear?? Not needed?? Quix

I read part of it last night, and the rest of it this morning.

I dont think it was too long or wordy, only reason it took me so long to read is because my boyfriend called me while I was reading, and so I just went back to reading it this morning.

I thought it was good...it explained a few things for me, and in a way I could understand it too.

Thanks, Erin.

As I was thinking about it last last there are two points about the Criteria I want to emphasize.

First, the neurologist must have a clear view of the pattern of symptoms and emerging neuro exam abnormalities before he ever approaches the MRI for additional evidence.

Second, is that the Criteria only deal with the T2 Hyperintense or enhancing lesions. That is also to say that they only deal with the immune-inflammatory part of our disease. This is the part that is directly responsible for our relapses and remissions (via demyelinationa and repair). But, we know that there is a separate and unclearly related part of direct nerve cell and nerve fiber degeneration/death that is more likely responsible for our accumulation of permanent dsability. There is also the destruction of gray matter via T2 lesions.

So when we are able to see the cellular degeneration via our imaging techniques, the Criteria will have to change to include them.

Quix

What about black holes? If a person has CIS and the MRI comes back showing T2 lesions, enhanced lesions, and black holes (like me!) isn't that a dissemination in time even without a second clinical attack?

Thanks Quix, good post.

I think it would be a good idea for all of you limbolanders to make a copy of this and hand it to your Neuro, when he/she, somehow, conveys to you, or writes a little note in your records, that you find later, that it's all in your head.:rolleyes:

Natalie, the Black Holes are seen in the T1-weighted images. They are the accumulation of areas of direct axonal (nerve fiber) degeneration. These correlate very well with both the accumulation of disability and with brain atrophy. Interesting enough, they are not so much the product of the inflammatory demyelinating and remyelinating lesions. So the Black Holes are NOT just the progression of the T2 lesions that the neuros talk about.

Quix

Thanks Quix. So if the black holes are not the progression of T2 lesions (which would show change over time) is this a separate process? How can I be told I have a bunch of black holes with my diagnosis 9 months ago but I have absolutely no disability at all and just the one incident of mild optic neuritis (where I still had 20/20 vision)?? Or is this just another example of how the MRI doesn't necessarily correlate with what is going clinically?

Natalie, this is exactly where the MRI doesn't necessarily correlate. The best way I can answer this is an excerpt from my blurb on "Lesions vs. Symptoms"



"First, lets talk about the BRAIN. Remember that about 90% or so of our brains are "unused." That means that we don't know what those areas do when they are healthy or might do if they are damaged. ALL of the scientific articles are clear that the majority of MS lesions in the brain are not "eloquent", that is, they don't "speak up" with actions or sensations in the body. The same is true that those areas don't show symptoms if they are damaged. No good MS Specialist is going to try to map all the lesions with the symptoms that are showing up in the patient. It is almost impossible and it is a waste of time. It is well documented that some people with many, severe symptoms may have very few visible lesions. And some people who are diagnosed when they have just one symptom may have a whole brain full of lesions on their first MRI which had never before "spoken up."

This is the best way I have to explain your situation.

Quix

Sorry I missed this post. So you have a CIS with monosymptomatic presentation. You had one attack and one clinical lesion. Whether you fulfill the Criteria for Definite MS depends on the location and number of your lesions. I don't know the timeline (duration) from direct axonal damage to "Black Hole." But, the McDonald Criteria do not address the whole "Black Hole" issue at all. They are never mentioned.

A good neuro will set aside the stringent requirements of the Criteria and use his brain to see the whole picture. This is where I become so angry at either lazy or wishy-washy neuro's who do not attempt to put it all together. If you are being treated as a CIS, but actually are a Definite then there is no harm. Your treatment is pretty much the same. However, the visible black holes indicate you have some real progression in your disease. They represent brain loss - get enough of them and the brain will contract around them and you will have significant brain atrophy.

In putting this together I would think your neuro would want to be an the agressive side was far as watching and treating, but actually I don't know for sure. On my other forum we currently have three or four people with significant brain alterations (lesions), but few or no symptoms. I have not see a good description of how these people are treated or what the recommendations are. And I was not a neurologist in my prior life.

Again the whole neuro field of clinical treatment (as opposed to the research part) usually act as though the T2 lesion represents the sum total of our disease, when gads of research is showing that it is only a portion. It is the portion that seems to correspond to our RRMS the best, but not to the accrual of disability that runs along in so many of us.

Quix

very interesting post, thank you.

can i ask if you're a radiologist or md?
just curious.
i don't think we've met.

I am an MD, but not currently in practice. I was Dx'd with RRMS a year ago and have been studying it since. I hope I can ungarble some of the technical info (putting my own spin on it, of course).

BTW - You stole my signature!

Quix

I've seen two neurologists -- my one at home and one at the Mayo Clinic. The Mayo doc. said that the black holes show that my brain isn't healing well (doesn't have the capacity to repair) so he suggested starting aggressively with Rebif (highest dose interferon) even with CIS and mild symptoms. Unfortunately, I could not tolerate interferons or even copaxone. I am switching to a new neuro at the MS clinic in my city in 2 weeks. I'm not sure what the next step is -- maybe Tysabri? I dont' know if they will give T. to someone who hasn't technically had a "relapse." But as I said in an earlier post I had T2 lesions, 2 enhanced lesions, and some black holes on the initial MRI. Maybe that combined with not tolerating the other DMD's will make me a Tysabri candidate?
Thanks again for the info.

Definitely NONE of the above!

Thanks very much for this excellent presentation.

You wrote: "[An attack] also does not include single paroxysmal events (sudden jerks, brief loss of vision, single spasms of a muscle, a single bout of dizziness). If the single event occurs mutliple times over a period of more than 24 hours it would qualify as an attack."

If that second sentence is true, then I certainly HAVE had attacks, quite a few of them! (Not that it made any difference to the neurologists I saw back in the way old days when I was still seeing neurologists...) I also had other things that lasted weeks or months that I would consider an attack but that they could not see (or did not try hard enough to see).

Quix, I am sure your outline above will help a lot of people understand their situation better. Thanks for taking the time to do that. Good for you!

Nancy T.

That's what I was thinking when I read this yesterday...I have two attacks and two lesions. What more do they want? Oh...I know...my arm to fall off :cool: :confused: :p

I'll just wait it out until the next time :rolleyes:

No, no GJ, we don't want your arm to fall off! Take the nice doctor two all-beef patties with special sauce, lettuce, cheese, pickles on a sesame seed bun, to help him recognize the McDonald criteria. :D

Hmm...every neuro is different...
 

First, Twinkle - that was funny!

Second, Quix, thanks for the post. I have seen the chart many times...and each time I see it, I am reminded that I do not fit the criteria for MS - according to McDonald.

I was diagnosed the first day I went to the neuro in January. I thought I had a pinched nerve in my face....neuro originally told me he thought that I had had a stroke (I was 31)...he sent me immediately for an MRI and MRA. He called two hours later to tell me that I had MS. No probable, no possible...it was definite.

There are times I just wonder why some people have such a hard time getting a diagnosis. Of course, I'm not a neuro. Part of me wishes my dx did not come so "easily" or quickly....but then again, I started copaxone 10 days after my dx....and stopped that and started Tysabri and have had two infusions so far. My current goal right now is to be seen at Johns Hopkins for HiCy. I have been told that I'm a solid candidate and am now waiting for my initial appointment to go meet the docs.

Anyhow, I digress... my main point, I think, was: why do all neuros view this differently? I know the dx of MS involves many factors and there is no one test to dx it definitively.... it is just so strange sometimes. I think, well what if I had one of the doctors that some of the limbo-landers had? I'd probably be w/o a dx right now... and that I would not stand for....I dunno. It's just crazy.

But then again...I have holes in my brain, so what do I know?!

~Keri :(

Am I just in a hilarious mood, or are there really more hilariously brilliant posts here than usual tonight? :)

Excellent memory on that jingle, Twinkletoes, although I think there was an "onions" after "pickles," n'est-ce pas?

Can you imagine a National Limbolanders Take Your Doctor a Hamburger Day, when we'd all march into our neuro's office at lunchtime with a McDonald's sack and ask them to go over the criteria for us? (Otherwise they won't get their hamburger, and then they'll be really sorry.)

Hey, if pharmaceutical reps can get the doctor's attention by bringing in free food, why not limbolanders too? :D

You know what? I think we patients should make up our own criteria with respect to doctors.

1. Doctors' thinking about the patient's case must not be disseminated in space and time. In other words, doctors must not be spacy, and they must be timely in their diagnosis.

2. A minimum of nine doctors in five separate locations are required to confirm a diagnosis of "the patient is just nuts." At least one of these doctors must be a psychiatrist.

3. A lumbar puncture is not required. However, it may be allowed if it makes the patient feel better to punch the doctor from behind as the doctor hurriedly leaves the room.*

*Just kidding, folks! I do not advocate violence! :)

I'm sure there were more criteria; can anyone think of the rest of them? :D

Nancy T.

thanks for sharing.
i understand your posts (but others may need some help). i've been an RN for 37 yrs.

dx'd rrms to spms 5 yrs ago. had to quit working in '05 because of cognition and mobility issues. i worked in the NICU and was always standing under open warmers. way too hot and made me into a wet noodle.

looking forward to more of your posts.

oh ps...

you can still use the line.
it'll be twice as good.

or, do you have another fav thought from desiderata?

sorry for your dx.
welcome to NT.

Nurse Nancy, We are kindred spirits! I was a pediatrician and often sweltered under the warmers - that was before MS. I can't even stand my home over 69 degrees. Thank God air conditioning is tax deductible!

Quix

AC is tax deductible???? really???? how come????

mine is already on as it's 85 degrees here in denver, 90 on Wed.

Judy

I think it depends on the State. I know in Idaho it's not. I've asked.

Av8rgirl is correct. I couldn't find data on a federal deduction, but many states do have one or a tax credit. Phooey!

When I had Major Med Insurance, I understood it was covered, if, your Doc wrote a prescription for it.

I knew someone with MS, who had an outdoor inground pool covered by Insurance. :eek: No kidding.

You hit the nail on the head Keri. As has been explained to me several times by several neuros, it's subjective! And not all patients present the same. The docs have to think outside the box...some do, some don't. Some can't for insurance reasons (think HMO!) and you have some skittish docs that are gun shy and have forgotten how to treat "the patient."

I am thankful that my neuro treats "me" and I get good quality treatment. When I failed all the conventional tx on the market, we put our heads together and came up with options that would work for me. That's how she treats all of her patients. I know this b/c I know several of them.

That's why I am in this clinical trial b/c right here and now it's the best option for me...nothing else has worked.

I may have fit the McDonald criteria in 2001, I don't know. We never pulled out the chart and checked off the boxes to see ... oh my! does she fit in this box! I have never been one to fit any "one size fits all" charts or dx or treatments. I am what a lot of my docs call the 1 percenter.

But I do know that when I applied for the clinical trial, there was a very strict protocol for admission and I had to be re-diagnosed and I fit that box very nicely.

And that was 6 years later.

Thanks for the information Quix...it's good to have it broken down for non-medical people to understand. But maybe the docs need to understand that we do know what we know too! ;)

Sally

My doc said that she could write me an rx for a therapeutic pool and my insurance would cover it. I thought long and hard about it b/c I would love one. I talked to my insurance company and they would have paid 50% of the cost. But they also said that it would be cheaper if I would join a health club and they would probably over ride the recommendation and tell me to try that first. They would pay for a membership.

Hi QUIX,

I've stumbled in my attempts to write this response for the past 3 days now, as I can’t seem to nail my points effectively. I give up trying :rolleyes: . . . but because at least some it may be valuable feedback, I will post my random thoughts. I hope you can see past my waffling, and that it doesn’t comes across as all negative . . .

I guess my concern with your write-up is that, even though what you've written here is accurate, I think some of it may be impractical for the 'point in time' in which people would be looking to access the information.

I see the audience for this information as those who:

- are just starting the dx procedure
- have gone through some amount of testing already, and the results remain inconclusive for MS
- want to understand their test results, and what they “mean” to the dx process
- want to understand why they didn’t get a dx (even though they have some type of “lesions”, etc.) . . . i.e. why they remain in limbo for MS?
- want to know alternate dx possibilities

My personal motivation for accessing this information would be to have a place to send those undx people, to help explain:

- what tests would LIKELY be ordered when MS is suspected
- what results would realistically prompt a MS dx, under current protocol

Contrary to ALL your other topic summaries, I would not feel comfortable sending people to this information. The reason is that I think it would only serve to cause more confusion for them, because it seems to focus to heavily on “exceptions”, rather then the “rule”.

For instance, even though MS is ‘supposed’ to be mainly a clinical dx, the REALITY is that virtually NONE of our specialists’ approach it that way (in N America, where we have technology). Rightly or wrongly, specialists here DO rely heavily on our MRI and LP results, at least early on in the diagnosis process. Over time (once they have a history on us), they may be more inclined to consider outside the typical dx box, but to date, I've never heard of anyone who has been dx quickly with MS if they do not have the tell-tale lesions.

It is my experience that people who don’t get a dx right away, (but KNOW something is terribly wrong), always think they are the “exception”. As such, they become very frustrated without a dx, due to a lack of ENOUGH objective evidence. Implying that there is even a remote possibility that they might obtain one, will probably only cause additional impatience and avoidable frustration for some people.

The bottom line is, if there is no objective evidence . . . people will not get a dx. IMHO, anything beyond that expectation should be detailed in your “Plan B” information, perhaps in the Limboland section . . . not here in the McDonald Criteria section. :confused:

With regard to lesions, it may be worthwhile to include something (even if it is just a reference to another section you’ve written) on “what is a MS-specific lesion”, ie. the different kinds of lesions that might be found in our brains (w or w/o MS), and other demyelinating diseases of the brain. It also might be worthwhile to include links (or reference) to other diseases that have O-bands present. Here’s two links to this information, which I've probably posted 1000 times:

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

http://www.diseasesdatabase.com/resu...ClassSort=True

Our specialists’ definition of an attack (or even symptoms), BEFORE we are dx, seems quite different then what is readily accepted as part of the disease process once we do have the dx. For instance, symptoms like heat intolerance, depression, pain, headaches, 24-hr twitches, etc., are not generally considered clear-cut for MS, PRE-DX.

If those are the type of symptoms we present with, and our MRI's do not provide evidence of MS, the docs will inevitably wait for some symptoms that SCREAM neurological involvement . . . even in order to do further testing. On the other hand, if we are numb from the waist down, or we have objective findings of ON, this would lend more credence to a MS dx, even if the MRI doesn’t support that finding. (I think your pre-dx information might be too ambiguous in this regard.)

Personally, I would also like to see more info about the UNnecessity for a LP, if everything else clearly points to MS. This is an invasive and potentially dangerous procedure, and it is entirely unnecessary with clear-cut cases of MS.

When it comes to the topic of the McDonald criteria, I think it is important to focus on what objective evidence one realistically needs, before a dx is likely. The other information you’ve provided is also very valuable . . . I just think it has more of an idealistic rather then realistic slant on it (perhaps due to your bias/frustration over being in limbo for a while).

Of course this is your baby, and I am sorry for my harsh judgment . . . I just worry that you might be setting people up for frustration with the way this is written.

Cherie

Hi, Cherie. I think you have misunderstood my intent in writing this, but have likely brought up something that I need to incorporate early in the piece. I am surprised that you had such misgivings about the piece, because I know that it has a place in the stuff that people along the way need to access. At some point, and I knew you have such people here, those who have been dismissed by lazy or ignorant neuros need and want to see the criteria that "damned" them.

This piece was already epically long and I was trying to keep it more directed.

Q

BUT,
Let's all talk about the way this piece is prefaced so that it is clearly for the person [I]very[I] far along in the diagnostic process - a true Limbo Lander.

Given your concerns, it seems I need a brief, but very definite, statement in the beginning that states that the person who is just starting on the road of suspicion of MS needs an extremely thorough history and neuro exam, an initial set of MRI's, and exclusion by testing of the mimics of MS in general, and an exclusion of specific mimics by special testing that might include EMG/NCV, EEG, lumbar spine films or MRI, evaluation by a rheumatologist, etc.

I agree, The McDonald Criteria should not be used early by someone to self-diagnose. It is too specific and technical and is too strict in its definitions to be used by someone who isn't already diagnostic "waste."

Or do any of you believe that a layman's description of the McDonald Criteria should not be available at all to people?
Quix

The following is an edit:

Wow! I just read your whole comment and I have to disagree in several places.

[QUOTE]- are just starting the dx procedure[/QUOTE]

I do not think that people early in the dx process need to be worrying about the MC. That is for their neuro's to tease out, because that's their job.

[QUOTE]- want to know alternate dx possibilities [/QUOTE]

The McD C has nothing to do with alternate Diagnoses, thus, this would not be a suitable place to look.

I disagree with several things here. Many neuros do lean heavily on the clinical part, and those are the one's we need to be seeing. On forums such as ours we see a skewed view of what "usually" happens in the Dx process. The people who are diagnosed properly or easily often do not seek out a forum, having had no difficulty with the diagnosis. If they do, their interest in the diagnostic process is less passionate and they may read, but not post. Some will offer their experience, but it is the exception.

I believe the rigid-thinking Neurologist is NOT predisposed to become less riged and more open to the possibilities as he is proven wrong in his initial thinking. That is not how this type of physician reacts in my 23 years of interacting with them. They are generally less and less likely to admit their initial path was in error.

I know people four, including myself, who were diagnosed with negative or atypical MRI and LP findings. I had only one misplaced, small, frontal lobe lesion when I got my diagnosis.

Yes, the statement that doctors tend to place disproportionate weight on the MRI and LP is necessary, but the topic of the McD C is to explain them not to explore all their misuses.

Oh, Cherie, I can't diagree with you more! I realize this goes back to a fundamental difference in the opinion we two have on this subject. But, in my experience, both on a forum and in medical practice, KNOWING that something is wrong, but having the door slammed on them dashing their hope is devestating to every person I have encountered except you, though I will give you that there are likely many, many more. People in this situation are pressed into despair and their hope is taken away. The increasing symptoms constantly remind them of their hopeless state, either forcing them to consider that they actually are crazy or that they will die without anyone acknowledging their pain and disability.

Where I come from, we have had more than half a dozen, realize that their there are different doctors and different ways to approach the diagnosis - who then have proceded to get a diagnosis! You are the only person to whom I have ever spoken who would prefer to accept KNOWING that you have something wrong and NOT knowing what it is. I believe that most people prefer a named enemy than an unnamed one who is stealing their life and abilities.

The good neurologist will help counsel those whose bodies do not give up the evidence and assure them they will continue to look and monitor over time. I believe it is worth the effort to seek out these docotrs, but they are not few and far between. My friends have eventually found them. It is easier to live with the frustration of no diagnosis when you have the validation of a doctor who believes you and will continue to search. I believe this with all my heart.

I've run out of time here to discuss all the other things I read in your post but, please remember, that wanting to have all these other topics discussed is actually wishing there was a book, written in plain English by someone who understands the technical stuff, so that everything is complete. That is a worthwhile desire and possibly a goal.

What I am doing is getting around with limited energy to writing on "topics" that are necessarily limited in scope. The discussion of MS Mimics and other diseases with have O-Bands is not appropriate in a topic called The McDonald Criteria. Nor is a discussion on the UNnecessity of an LP. Though it is probably worth pointing out that the McD C rarely require an LP. The diagnosis can be made without one and OFTEN IS.

Perhaps there should be a companion article recommended which does discuss some of these things. All I attempted to do was explain the McD C - not to justify the way they are used. Even so, if you read my article you will see how much emphasis I put on the History and Neuro Exam and by, the way the McD C are formulated how much the authors of it placed also on the clinical signs.

I will agree that the article could use some qualification as to what it is and who might benefit from it. But, at some point people will look up the McDonald Criteria to see what it is about - and it is hard reading.

Cherie, I reread my answer to you and misspoke. I know you would not "prefer not to know your diagnosis." I realize that your stance on this is that if you were who remained without a diagnosis for a long time, you were prefer not to constantly agitate for one and be frustrated that it isn't coming.

Sorry, I was writing quickly. But, I would still like your's and others' input on how to make this topic of "The McDonald Criteria - in Plain English" better oriented to the people who could actually benefit from it.

My expanded answer was not to shoot down all that you said. I'm sure there are things that would make its limited purpose more clear. And clarity is what it needs.

Quix

Excuse me for interjecting here, but, I believe that you, Cherie, are being a bit over dramatic here, about the harm this info may do to your list of patients.

I think Quix's writings are a welcome relief to the people to whom she has directed them......Frustrated, scared and somewhat angry Limbolanders.

She is right and you have misunderstood her intentions and misjudged them. I find Her writings a refreshing addition to our WDMs against MS. :D

I know you don't mean to sound condescending to anyone. I believe that most people with MS can read and decide for themselves, just how helpful Quix's writings are.

JMHO...:grouphug:

I really did not mean to insult you in any way, QUIX . . . and I am very sorry if I did. I was struggling trying to make my point, and probably got unnecessarily wordy trying to do that, but I was really only trying to communicate an overwhelming "feeling" I got that wasn't sitting well with me.

Maybe it was simply the way that the piece was started . . . I don't know. :(

I'm not at all suggesting people should not continue to pursue their health concerns when they know something is wrong (and we all know our own bodies). I just think that doing so, when the tests aren't initially conclusive, takes a person to the "next" part of their journey, beyond "The McDonald Criteria" . . ..

Maybe things are different in the US, but they are fairly stringent here. Additional opinions and time (history, further testing, etc.) CAN change the outcome . . . but nothing else seems to. I do not think that this is satisfactory, just reality from my experience.

If my input has no value, PLEASE feel free to toss it in the bin!!! You definitely do not need to defend your approach to me . . . I just wanted to be honest about my thoughts and feelings on it.

Again, I'm sorry if this made you feel bad or angry. :hug:

Cherie

The bigger question here, IMHO, is how many neurologists actually use the McDonald criteria for diagnostic purposes?

Is it a guide or is it a requirement that they follow it to the letter for diagnosing?

There is no easy answer. It's subjective at best. Docs observations are subjective, even reading MRIs. The same patient can go to 3 different docs and get 3 different opinions as to whether or not they have MS. A good friend of mine has been dx, undx, and re dx by the same neuro over the past 4 years. He can't make up his mind. That's the trouble with NOT having a definitive test for a disease or disorder, whether it be MS or something else.

Putting the McDonald criteria in layman's terms may help PwMS understand it better but it's not going to change how the doctors use the information. It may help how we, as patients, ask questions, so that may be the value of breaking it down.

Sally,

I have been "over dramatic" (excited!!) about QUIX's write-ups, on all of the subjects so far. I am thrilled I have a place to send people to now, so they may better understand the disease, and appreciate QUIX's simplicity on subject-matter.

I just had a heavy feeling about THIS one, and thought it ended more complicated then "The McDonald Criteria" needed to be (IMHO). I so appreciate how QUIX has made topics so simple . . . I just didn't get that from this particular one.

I could have kept quiet (and perhaps I should have) . . . but that's never been my style. ;)

I truly meant no harm though . . . just food for thought. :o

Cherie

Great points, Cheryl!

Cherie

Excellent points!!

And, Cherie and Quix, I appreciate reading your very thought-provoking exchange full of good perspectives--lots of food for thought there.

I am on the pessmistic side about the chances of people getting firmly diagnosed when their symptoms and/or test/exam results in the first year or two don't loudly scream MS. But people who are clearly bad and/or worsening need to keep seeking help. Having input and exchanges from people like the two of you is, I'm sure, going to be really helpful to a lot of people.

Cheers!

Nancy T.

A lucid moment today! ;)

Cherie, I didn't feel bad or angry in any way, nor did I discard your opinions. I merely disagreed with some of them. I know this forum has come to love your expressions and your opinions. They should never be kept quiet, but we both have be ready for disagreement

As to the complexity of it when my articles are usually simple, I can't agree with you more, Cherie. The problem is that I knew last summer this topic needed explaining. I sat down more than a dozen times to distill it. I gave up every time until about a month ago when I realized that it is a complex topic that I do not know how to make simpler except with a lot of words in plain English. This was absolutely the hardest thing I have ever tried to write. I all but sweat blood over it.

Each time I tried to distill it, I lost critical defintions and critical meaning. If it can be simpler, than this is where I am asking for help. There is a chart which should go with it, but many people have told me it makes their heads spin. It still needs to be included, but I haven't made the table yet. I was just going to take the table from the NMSS website Tipsheet.

Okay, so I am using you guys as guinea pigs. I thought Cherie gave me some good points within the scope of the article about focusing the beginning with a statement of purpose.

Where else can it be improved? Afterall, I was never a writer. I did have to give spontnaeous verbal explanations to parents on stuff and I got good at making most things somewhat understandable. But, I tend to be wordy and get off-topic. Maybe we can edit the darn thing. I could repost it here in the middle of the thread, then we could edit it. I would use different colors for the changes and we all could see when it was clearer. If it got good enough maybe you would want to stick post it to the top as a resource.

It strikes me that I am smart and most doctors are smart (though I seem to run across a lot of them who don't access their "big boy brains" very well.) If I had this much trouble explaining it, perhaps many neurologists haven't put out the effort required to do it. I have heard at least a dozen time that some neurologists believe you need "9 brain lesions" to diagnose MS - a brief reading of the Criteria shows this to be false, but they say it to us nonetheless!

Alternatively, would one of you write a plain English explanation of the MC? That would probably be even better.

Quix

I understand your points, QUIX.

Maybe I just need more time to think on this one, cause I honestly have not tried to before . . . except as the questions/panic/frustration, etc. have unfolded on the forums.

My sense is that the first priority might be to determine the audience for this information . . . then, simply, what does THAT audience NEED to know?

I appreciate there are exceptions; there are more open-minded specialists; there are people who get a dx without fitting this criteria . . . but if that information is provided in this section, perhaps it could be in a "beyond the McDonald Criteria" section.

I don't know . . . like I said I should probably think on this more. I don't know the answer, I just know when something doesn't feel right. My intuition in this regard is fairly reliable . . . even if the problem ends up being much less significant then the way I view it initially. :p

Cherie

Cherie, this whole thing is definitely getting weird. Your choice of words really is dramatic and full of dread and potential disaster, as if the wrong person reading this would truly be injured. This is totally beyond my comprehension. The use of expressions like

Your really think this is a time bomb or something!!

This just seems dramatic. Was it like a feeling of doom, perhaps?

Is it really that damaging? Wow... I guess the solution here would be NOT to refer people to it.

Cherie, I attempted to open a middle ground to address those of your worries that I thought actually pertained to a limited topic, and you ignored them all. I am losing any further desire to address your very severe unease about a "factual" topic. You continued to express the doomy feeling:

.

I guess I have a greater belief than you do that people can evaluate information on their own. I WILL relook at the whole thing to see where I may be luring people into something potentially harmful. But, in all honesty, I don't believe that people generally need that protection. We are all adults.

I am at a loss here to understand your tone about the article. That leads me to think there is something else on your mind. If there is another topic (that causes you to feel this way) and you're are unwilling to share it publically, you can always PM me. I've been getting a lot of those recently. I might as well hear from you.

Completely baffled, Quix