The McDonald Criteria- can someone explain this?

[MissLauraI]

Good morning everyone!

I 'm sorry for such a basic question but I am at a loss. I have been trying to understand the 2010 McDonald Criteria for diagnosing MS.

I read the Health Pages and other places for the new revised criteria for 2010. What I don't understand is what it means. Maybe it is just my usual confused brain, but I can't for some reason figure out what they mean.

Can anyone explain the different ways the MC is used but use different words from "time and space" etc. Thanks for the clarity :D

For instance- I have many MS symptoms and "2 small frontal lobe focal hypertensities" not classic for MS. Does this fall into the MC 2010 criteria?

I hope you all are having a good morning.

Cheers,
Laural

[MissLauraI]

Thanks Mary that is good advice. I know I am just anxious to get unstuck but not really to have someone say, "you have MS or something else for that matter". So I take to heart what you are saying.
As far as symptoms go, if I could not feel like I have to go to the bathroom ever 30 minutes, get rid of the extreme pain in my feet, muscle cramps and get a good nights sleep--I at least would "feel" better. It won't fix my leg or the fatigue but that is a good place to start :D

I have asked for something to help me sleep but the dr. doesn't want to give me anything because I guess you can get addicted. I take meloxicam for the pain but it doesn't really do much.

[twopack]

Your own words are the best ones to use.  It's a healthcare worker's job to understand patient language.  They get suspicious if you speak med lingo anyway.  For now, you only have to understand enough of what they say to ask good questions.  That's what we help each other with here.

Keep pushing for the RIGHT diagnosis.  The MS medications do have some side effects and they definitely DO hurt a person's wallet.  Besides, it does plenty of harm if you miss out on a helpful treatment because you set your sights on something else or stopped searching too soon.  We have had several members find out they had something OTHER than MS.  The internet is a lousy place to get a diagnosis.

Hang in there.  I know it's frustrating but patience can be essential.  Do you have any symptoms that could improve with treatment but aren't being addressed?  No doctor should refuse to prescribe symptomatic relief just because you're still on the diagnostic treadmill.

Mary

[MissLauraI]

Mary- I don't have the medical file. It was two decades ago and prior to computers. Heck I don't even remember the doctors name! I do remember what hospital though as I spent so much time there. I know what you are saying though. The only thing is, MS was never a consideration until this last episode.

I don't have a medical degree and therefore am an unreliable source as to what is happening to me. I use words like, "I feel like there are little vibrator thingies going off in my face, legs and arms". If I had a medical degree I would say something more "doctory" sounding LOL.

Lisa-You and Mary made me laugh so that was a good uplift to my day! I am going to keep pushing. If the medication won't hurt and it helps to slow this train down...I say bring it on.

Thank to both of you!! You are all great!

[LisaJF]

I love your rambling!!!!!!!!

[twopack]

To begin with, with know docs will put their personal "spin" on test results.  That can be a great thing if they are looking at the whole of results and patient and signs and symptoms.  It's not so good when they randomly (with no reasonable explanation) decide a test is in error or doesn't apply.

So that makes me wonder, do they do the same thing with the McDonald Criteria?  How are the MC even used?  I'm sure there is no MC checklist in my chart.  I wonder how many docs only BELIEVE they know or understand what the MC says.  Are the criteria really THE standard used for diagnosis?  They seem more like a guideline, and one that is often ignored besides.  Maybe this would be a good question for Lulu's MSologist.

Anyway, you don't need the MRI info at all.  If you only have two lesions and no idea when they first appeared, I don't think they help much in using the MC.  The criteria describes both a clinical and an imaging route to diagnosis.  Either one can be used alone.  It's just much easier if one set of evidence supports the other.

DIT means you had symptoms, they went away and later you had more (usually over the course of months or years).  DIS means symptoms indicate lesions in several parts of the CNS (brain, spinal cord, cranial and optic nerves).

Do you have documentation of your symptoms and care from the past?  I imagine some docs are not going to give your history a lot of weight unless they read it in a peer's notes.  Not saying it's right but most docs prefer objective info to listening to a patient's story- just the way it is.

Hope something here helps you.  I know I left a lot of rambling.
Mary

[LisaJF]

I would not blame you to worry if this is progressing and the fear that it may debilitate you in a way that you won't be able to walk or lose your sight!  I mean, an ounce of prevention, it is NOT going to hurt them to place you on a DMD while they make up their freaking minds?!?!?

The LP would only support the diagnosis but does not mean if it came out negative that you dont have "MS".  EMG's can come out normal too and you can still have MS.  

I'd get a new Neuro just on that fact. LOL.  I have no patience for people who do not move.  However, if it were their body going through this, you bet your bottom dollar their a$$ would be at a MS Specialist so fast our heads would spin!!!!  They would demand this and that to avoid any progression or to slow it at least.  You know it and I know it.

Shelly is fantastic and she is GREAT!

I wish you the best MissLaural!!!

Lisa

[MissLauraI]

That is my greatest concern now. I mean if I have had MS for more than 26 years and now symptoms and attacks are getting worse and closer together, i want to do what i can to slow it down if possible.

i don't want to keep waiting. It is like what the heck are we waiting for? Waiting until the meds will have no affect and I am in worse shape.

That is the main reason I have so many pressing questions. I feel that time is not on my side here. I have asked for the EMG to be moved up to the first part of May after reading your post. My doc said he would see what he could do...so now I am waiting to hear back.

When that is done and the LP is done, I will ask for another opinion if he is still on the fence without an explanation for me.

Thanks for your help-- you are great!

[sllowe]

Miss L,

Where MS is concerned, I'd say you can have typical, and atypical patterns of lesions and locations. Though of course when being followed initially, typical is what will bring your doc to look more closely quicker.

In your case it sounds possible that they did not consider those 1st two episodes as attacks initially, and now they are.

Here's my concern with some of these docs and they're reluctance to name if MS is considered - I feel they are doing a huge disservice to the patient and negligent. Because if this is not clinically "definite" MS, and it IS by chance CIS, they you need to be on meds to minimize the chance of definite MS. If the doc is good he/she will be more than happy to refer you for a 2nd opinion.
And, if the doc is unwilling to give you his thoughts on what this is after these two tests, if it were me, I'd move on to another doc for a fresh set of eyes. If MS is off the table (or anything else he is investigating), then tghe doc should be willing to state the "why's." Why it's not this, nor that, etc.

-shell

[MissLauraI]

Shell-
I read those and still have a question. My lesion diagnosis stated: :

2 small focal T2 hyperintensities involving the left frontal subcortical white matter."

I guess that is why I am confused because I have had at least 2 MS type attacks in my life. Neither were suggested for MS until a 3rd incident happened 2 years after the 2nd one--along with a host of new symptoms that are not going away.

Now they are looking at MS.

I just don't know if the lesions they found could fall within the MC or not. I think the attacks as far as symptoms go- could be considered clinical symptoms.

I understand that there is no one here that can give a diagnosis...just opinion...but I really appreciate that because you are all more experienced with this and communicate way better than my doctor who isn't into answering all my questions. He just keeps telling me to wait until the EMG and the LP in 2 months. (I guess the waiting is stressing me).

CoBob- So if I had 2 separate attacks (age 26, age 50) that I never had an MRI for, but had clinical symptoms of, does this qualify for DIT? It wasn't until this 3rd attack at 52 that they did an MRI and found the lesions I described. I have a bunch of classic subjective symptoms for several years and they are increasing.

[addicted2harleys]

I don't know, Lisa.  :(

I just know that I don't have reflexes.  Whether the doc hits my inner elbow, knee or ankle, no reflexes are there.  

I think I recall posting about this back around June '10 when it was brought to my attention.  I thought the response was that with MS you generally see hyperreflexia.  And that no reflexes pulled away for an MS dx.

Addi (confused)

[LisaJF]

Normally with hyperreflexia, with upper motor neuron diseases such as MS will be evident while grading deep tendon reflexes.  Acute spinal cord lesions like transverse myelitis  can cause areflexia.

However, with MS -- I am sure anything is possible -- dont you think? :D

xxoo Lisa

[addicted2harleys]

Areflexia??  

I thought lack of reflexes pointed away from MS?

Have I misunderstood this?

Thanks,
Addi

[COBOB]

Dissemination in Time (DIT) can happen two ways. 1) More or different MRI lesions typical of MS on two different or one or more GAD enhancing lesions mixed with older non-enhancing MRI lesions on a single MRI -or- 2) two clinical attacks more than 30 days apart.  

Dissemination in Space (DIS) can happen two ways. 1) MRI lesions in 2 of the 4 locations  identified by the 2010 McDonald Criteria -or- Clinical Lesions (signs - Weakness, hyperreflexia, areflexia, other neurological signs) that point to two different areas of the brain or spinal cord.

Bob

[sllowe]

H Laural,

It can be confusing. We are unable to say if you meet the criteria, because MS is in the end a clinical dx. But, if it helps, this is a good chart - not much has changed:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-Revised-2005-CHART/show/506?cid=36

Also, this is a comparision year-to-year write up, which, like you mention there are revisions to the dx guidelines in 2010, and I will be adding that in the coming weeks.

But, even without the add, you will see how the 2006 guidelines greatly detail DIT and DIS. There is a link to the source doc in the right hand corner of the page. Much of what was written then, has been in practice.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnostic-Guidelines-Chart---The-McDonald-Criteria-2001---2005---2006-proposed-/show/448?cid=36

Hope the two provide some clarity.
-Shell