Married to the McDonald Criteria

We haven't talked about this for a long time.  But for all the new people here searching for a diagnosis.  There is a set of "rules" for diagnosing MS, called the McDonald Criteria.  These rules are not God's Word on earth.  Too many doctors believe that every patient needs to fulfill all the the McDonald MRI rules to get a diagnosis of MS.  This is just NOT the case!

I need to re-emphasize that in order to make the diagnosis a person needs two things.

1) The first is to have had 2 or more distinct and separate attacks of symptoms.  This shows that the disease has spread out in time This is called Dissemination (spread) in Time.  Many neurological diseases cause symptoms like MS, but they do it in one attack only.  Examples are a stroke, a case of encephalitis, or a brain tumor.  MS (RRMS) causes attacks repeatedly.

2)  The other thing a person with definite MS has is at least two different symptoms or signs that show that the disease has attacked more than one part of the Central Nervous System.  For example a person might have had Optic neuritis and has hyperactive reflexes in the right leg.  This shows that their disease has damaged the optic nerve and part of the spinal cord.  This is called Dissemination (spread) in Space.

What are we to do when a person has had only one attack or has only one area that has been damaged?  The Criteria were written to try to allow doctors to use the MRI data to "fill in" for the missing attack or location of damage.

So the main intent of the McDonald's Criteria was to allow EARLY diagnosis of someone when they had had only one attack of symptoms that were suggestive of MS.  The Criteria allows doctors to use the number and location of lesions on the MRI of the brain and spine to "substitute" for either an attack or for showing a lesion that is in a different location than a patient's symptom.

Too many doctors have gotten the wrong idea that all patients, even ones who already have multiple attacks (have Dissemination in Time) and who have multiple areas of damage in the central nervous system (have Dissemination in Space), need to have the numbers of lesions talked about in the McDonald Criteria.

This is WRONG, guys.  When you read the literature, you see that if a patient has Dissemination of disease in Time and Space, then all most experts want to see is a couple lesions.  In fact, having TWO lesions is just as good at showing that the patient has MS as having twenty lesions.

This is why we ask people about how many atteacks they have had and what different abnormalities they have on the neuro exam.

Theoretically it is true that if a person has had 2 or more clear attacks and has had 2 or more areas of damage seen on exam or testing then they don't even need an abnormal MRI.  We have had people here on the forum who were diagnosed with a normal MRI.  The MS Society still says that as many as 5% of people with MS have a negative MRI.  BUT, the reality of it is that the vast majority of MS experts still do want to see SOME (even a small one)abnormality on the MRI before they will make the diagnosis of MS.  

opinion: I am frustrated by this because so many people get their MRIs on inferior machines or have them looked at by inferior minds.  I think this reliance on the MRI is preventing a lot of people with MS from getting a diagnosis.  But, that is me and I can't change the world.

The other purpose to formulating the McDonald Criteria was to make the diagnosis of Primary Progressive MS a little easier, by using MRI info and by removing the requirement that the spinal tap be positive.

So, any doctor that looks at a patient who has had 2 attacks or more and has 2 or more abnormalities shown by the neuro exam or by evoked potential testing and tells them that "they can't have MS unless they have 9 lesions" doesn't know what they are talking about.

I tried to write an explanation of what is involved in the diagnosis of MS and of the McDonald Criteria.  My explanations are very long and probably too wordy, but I still recommend that people in Limbo read them and make the attempt to see what is involved.  There are two Health Pages that discuss this:

The History of the Diagnosis of MS

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/History-of-the-Diagnosis-of-MS/show/158?cid=36

and

Diagnosing MS - The (revised) McDonald Criteria

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

Understanding these points can make the whole process more understandable.  It can also show where a neurologist is out in left field.

I hope this helps.

Quix

[Lulu54]

Thanks Q for this important public service announcement  - this is definitely worth repeating with all the newbies here.  I hope they will heed your advice and read that other works you cited.

As always,
Lulu

[Trace420]

Thanks for the reminder, Quix. I'm sitting here completely nervous because I have clearly had multiple symptoms and multiple attacks over the past eleven years or so, but I have a negative MRI. I have my first visit with a neuro tomorrow, and it's good to get the reassurance that I'm not crazy even if he ends up thinking I am.

It's not fibro, lyme, lupus, thyroid, or RA, at least as far as any of those physicals or tests are concerned. Either I don't fall into the risk categories for any of the other mimics or the symptoms don't fit. I have an aunt with MS.

I have written out a timeline to take with me; I've heard many people on here suggest it and it seemed to make sense. I just hope the guy takes me seriously.

Thanks for your compassion to all of us who know something is wrong but don't have any validation for that.

[michelleric]

Thank you so much for the great explanation you gave here:

So, any doctor that looks at a patient who has had 2 attacks or more and has 2 or more abnormalities shown by the neuro exam or by evoked potential testing and tells them that "they can't have MS unless they have 9 lesions" doesn't know what they are talking about.

One of the things my neuro told me, who is a MS specialist , is that I don't have enough brain lesions shown on the MRI to diagnose MS. She told me I needed 9, and come back in a year and a repeat MRI @ that point. She told me to call if anything changes...and as you know, I have been in some type of flare for about a month now. I am seeing her tomorrow and am fearful that she wont know why I am back and be unwilling to help me. I can already feel my frustration building, but NEED to do something to feel better. I am going to get a second opinion in the future, but am giving her 1 more try. I think she will have more info with this visit than in November. So, we will see and I will continue to march forward...(or a bit wobbly to the side!)

Thanks again for the info,
Michelle

[ashleyPT]

thank you so much for your clear explanation.

[Eyesnlegs]

Thanks that's a great explanation it will help loads with my appt with the neuro.

I just have one question - if we know that we fit the criteria you describe but the neuro does not agree because he belongs to the 'won't budge on the McDonalds  criteria' bunch of neuro's - what do we do Do we just keep going around neuro's until one cracks and gives a dx?

Any advice here welcome

Please keep up this invaluable work here it's much appreciated.

((((hugs)))
Pat

[PastorDan]

Michelle, do you wobble to the left or the right?  Just wondering if we'd knock each other down or hold each other up.

Wrote a long reply in this tread last night before the network blanked out on me.  Must not have been meant to be read.

[lvfrogs]

Thank you so much for this information!!

[HVAC]

I have had different lesions on three brain MRIs over two years and abnormal VEP and have had symptoms for two years which are getting worse and have had everything else ruled out but if my LP comes back negative my MS Specialist will not treat me. All the Neurologist say I will have MS but I am not there yet. I am not sure but am told I don't fit the Criteria.

   Alex

[summerluvr]

This is very informative post for me. t/y

I can see now why the Urologist became concerned after he took my history for the last two year prior to seeing him for the bladder retention. He told me I needed to see someone who will look at the big picture and stop seeing individual specialists who only look at a narrow set of symptoms. That it is not normal for young women to develop these issues and he always treats them seriously.

He set up the referral to the neurologist (who heads the MS clinic here) and also ordered an MRI (i had it last week but haven't heard back)

Here's hoping I get some answers when I finally have my referral.

[michelleric]

Thanks for making me laugh today. I needed that!
Michelle
By the way I wobble to the right!  If you go to the left, perhaps we can be on dancing with the stars together!

[young at heart]

QUIX,

ARE YOU REALATED TO MY MS SPECIALIST,I SEEN HIM LAST WEEK,THE WORDS YOU JUST WROTE HE BASICALLY SPOKE,HE STATED SEVERAL TIMES,WE HAVE TO MANY DRS. THAT WANT TO USE A TEXT BOOK FOR A DIAGNOSIS,HE STATED,IF THEY RELY ON THE TEXT BOOK(REFERRING TO THE MCDONALD CRITERIA,THEY NEED TO GO BACK TO SCHOOL AND RELEARN WHAT,WHY AND HOW IT WAS TO BE INTERPRETED.

HE STATED IN OUR LACKING TECHNICAL SOCIETY,TO MANY PATIENTS,NOT ONLY MS ARE DISMISSED,THROWN ANXIETY MEDS,WHILE DISEASES ARE EATING AWAY AT THEIR SYSTEMS.

HE WAS TRAINING A NEW MS SPECIALIST THAT, DAY,SHE WAS A SWEET HEART.HE ASK IF A PATIENT CAME IN WITH NUMBNESS,BLURRINESS,EYE PAIN,HYPER REFLEXES WHAT WOULD SHE DO,SHE STATED A MRI,HE TOLD HER NO,THEY ARE VERY COSTLY,START OUT CHEAPER AND MORE DIAGNOSTIC WISE,START WITH EVOKED POTENTIALS,EMG/NCS.HE STATED MRI'S DO NOT SHOW EVERYTHING.
HE STATED IF A PATIENT HAD A VEP AND POSITIVE WITH ON ,HAD 1 LESION AND HYPER REFLEXES WHAT WOULD SHE DO,SHE STATED WAIT,OH,HE WASN'T HAPPY,HOWEVER HE GENTLY EXPLAINED,NO IF EVERYTHING HAS BEEN RULED OUT THEN START DMD.HE SAID WHAT YA WAITING FOR A PATIENT TO END UP IN A WHEEL CHAIR.
HE REALLY WENT OVER THE MCDONALD CRITERIA SCORE,AND IT WASN'T MEANT TO STATE  IF A PATIENT HAD 2 LESIONS YOU WAIT UNTIL 9.HE TOLD HER IF THEIR WAS LESIONS,YOU FIND THE CAUSE,NOTHING SHOULD EVER BE DOCUMENTED BY A RADIOLOGIST AS INCIDENTAL,IF THERE IS SCARING IN THE BRAIN A DRS. JOB IS TO FIND OUT WHY..
WHAT BLEW MY MIND A WAY WHEN HE STATED SIZE OF A LESION DOESN'T MATTER,HE EXPLAINED,IF A DR. IS WAITING FOR A LESION ON THE OPTICAL NERVES,OR NEAR OR IN THE BRAIN STEM TO BECOME BIGGER,HE NEEDS HIS LICENSED TAKEN A WAY.
I WISH SO MANY HERE COULD SEE HIM HE FINDS THE CAUSE,PLUS HIS GENTLE NATURE,AND HE MAKES YOU SO RALAXED,HES UNCONVENTIONAL,THE FIRST I MET HIM HE ASK ME IF I ENJOYED WALKING MY DUCK THIS MORNING,I'M THINKING,GET ME OUT OF HERE,HIS WAY OF BREAKING THE ICE.
LAST WEEKS APPOINTMENT HE ORDERRED ME AN ELECTRICAL SCOOTER FOR COLLEGE,HIS IDEA,WE TALKED ABOUT THE BANK BAIL OUTS AND HOW DISABLED SINGLE PEOPLE ARE KEPT BELOW THE 150-200% POVERTY LEVEL AND HOW WE NEED TO BE BAILED OUT,WE ARE BEING PUNISHED SOCIETY WISE AS HOW A DISABLED PERSON IS VEIWED,WE OUR FINACIALLY KEPT POOR. BUT AS A COMMUNITY WE ARE THE MOST POSITIVE AND ARE THE ONES ALL TO WILLING TO OFFER A HELPING HAND TO ALL,HE STATED A DISABLED PERSON HAS MORE DETERMINATION THAN A PERSON OF GOOD HEALTH,WE ARE GENERALLY HAPPIER.BUT LABELED.

HE STATED MANY DRS. ARE TRYING ON OUR DISABLED BEHALFS TO GET DISABILITY RAISED SO WE WON'T BE  AT A POVERTY LEVEL.HE ALSO STATED MANY MS PATIENTS HAVE BEEN DENIED DISABILITY BENEFITS BECAUSE MS IS ON A RAPID RISE FOR UNKNOWN REASONS.

QUIX--YOUR INSIGHT ON THE MCDONALD SCORE HELPS MANY TO UNDERSTAND IT.

T-LYNN