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 . . . 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.

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.

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...

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.

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.

Great points, Cheryl!

Cherie

A lucid moment today!

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.

I completely agree with you. We can't change the way some neurologists make their diagnostic decisions. And the result of a lot of those decisions leave us in a wasteland. But, if we already know the pitfalls, and the way they should be analyzing the information, we are better able to fend for ourselves. We can dump the defective neuros earlier and guid the wishy-washy ones with pointed questions.

As to whether these Criteria are hard and fast, you will get varying answers to this. It is stornger than a Guideline, but weaker than a Federal Law. Generally Criteria are more to be followed than not. Neuros with less confidence and skill will be "safe" if they follow them rigidly. They will be able to defend their decisions if challenged. Truly smart, skilled and confident doctors know when they can see a wider picture and diagnose outside the Criteria.

The "problems" of diagnosing outside the Criteria are 1) a weaker defense if challenged, 2) some patients won't qualify for certain studies, 3) certain meds may not be approved, and 4) potential problems with insurance.

Someone said recently that Neurologists are often linear, mechanical thinkers. A person may qualify for diagnosis until the MRI is atypical. Then, that supercedes the earlier information. We should attempt and look for the non-linear thinker who can think and evaluate laterally - seeing a global picture that shows the diagnosis, despite varying from the Criteria.

The upshot is that we can't know when we have been snookered without good information. I do believe there is no such thing as too much information.

Quix