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

I am not advocating changing how our docs dx us, nor am I advocating doctor shopping. I also don't think we are in a medical wasteland. However, knowledge is power and the more we know as we go through the dx process, the better we are.

We are not medical professionals. We are patients seeking help and therefore lean on the professionals to know what they are doing and how to interpret the results. Again, knowledge is power. But when we go in for the first time, scared and not knowing what's going on, we have no knowledge.

Doctor shopping is sometimes difficult depending on where you live...even some have mentioned that they cannot switch docs within the same practice.

We are there to be helped, not to guide. There comes a time when we should work with the doc, but to start right out in the beginning with an "in your face" attitude does not lend itself to a good doctor/patient relationship.



Guidelines are guidelines and should be used as such. I agree that some docs probably follow these Criteria, but I am willing to bet that if you were to do a survey, not very many keep a copy of the MC on their desk or in the exam room to refer to when examining a patient.

I don't believe that dx'ing outside the MC is critical for insurance purposes. I also don't believe that my insurance company asked my neurologist when I was dx'd "was she dx'd using the MC" and if so which box did she fall under.

The MC is just that, a guideline that they use, not a rule that must be followed. It gives the docs a starting place. They have to have one otherwise where would WE be?

I also don't think there as many people who get snookered or there are as many bad doctors as you are alluding to. That's just my opinion based on my association with the organizations I belong to and the background I come from....FWIW...

Hi, Cheryl, I still agree with you. We shouldn't have to guide our doctors. A great deal of the discussion on this topic is that the doctors do NOT keep the whole picture in mind. Yes, they should, but too often they don't. That is when our own knowledge can sometimes help.

I never advocate an "in your face attitude" by a patient - ever. That is akin the cutting your own neck! The patient should not feel adversarial, appear to be adversarial nor should they seem to the doctor to be pursuing a single diagnosis. But, knowledge about what the person is going through can be used to process what is being said to them. In many cases it can help the new, frightened patient to realize that the process of diagnosis is not necessarily linear, quick or easy. You are totally correct about the need to work with our doctors. First you have to find one that will listen to you, look at you, actually examine you and think!

As to doctor shopping - that's a perjorative expression used to indicate people out to get something they want. I am talking about searching for a doctor who will give you what you need. I will assert that many people, even those without a good amount of medical knowledge "know" on some level, when they have been dismissed or mentally discarded by a neuro. I have heard many dozens of people express this. At this point, you can give the doctor one more try in case it was a bad day for them, or you can look farther. This is a far cry from doctor shopping. In my mind this is only prudent. Would you stay with a contractor who was not listening to you? In a broad sense we "hire" doctors to help us.

As for the McDonald Criteria. In medicine, guidlelines are just that. They guide the doc allowing him/her to use their own judgment. Criteria are much more stringent. The two words are not used interchangeabley. They are more than a starting pace in the eyes of the medical profession. They are actually the "necessary parts" to a diagnosis. I have heard of insurance denying things because criteria have not been met (it happened to me with the "criteria" for Kawasaki's Disease in kids and paying for IVIG) These things are usually won by the patient or doctor on appeal. This is because in all diseases with criteria that I am aware off, the atypical case does occur and often is not that uncommon.

When I listed potential problems when not following the Criteria, they were just that: "potential" problems. An insecure physician, and there are many of them, will not stray outside the Criteria. Medically and legally they are safe, if that is their main concern. Some studies do require that a patient fall within the Criteria in order to keep their sample population as uniform as possible and the results as acceptable as possible.

No, you are right about the neuros that don't keep a copy of the Criteria on their desktop. They probably should and so many of them would not be telling patients that to have MS you must have 9 lesions in the brain.

Criteria such as the MC are continuously in flux as the medical profession discovers they miss cases. That is why the original McDonald Criteria of 2001 was revised in 2005. They were too stringent and it became clear as spinal cord imaging became better, that spinal cord lesions were actually much more important than was previously thought.

Cheryl, I do not mean to ever imply that there are more bad neuros than good, though I probably sound that way. I see a skewed population here on MS forums. I see the people who have been discarded. They are the ones who often turn to other avenues to find out why this has happened to them. How many have I seen? Maybe 75. It makes it seem like the medical profession is crawling with them. BUT, If I come across damning the whole specialty neurology I have not been even in my remarks. There are something like 400,000 diagnosed patients in the US. Clearly they were not all dismissed.

The profession is full of competent, worthy, honorable people who work hard to do right by their patients. However, there are plenty of them that are dismissive, incompetent, down-right misogynistic, and who wreak real damage on people who need to be heeded. Yes, I was one of those people and I have met dozens of others. This board has plenty of them. It is for those that are being robbed of the chance to slow a disabling disease that I make my comments.

Actually, Cheryl, you do remind me to be less generally strident. I know the neuros that I speak of exist and that they harm people, but they do not make up the vast supply of doctors. That's is exactly why it is appropriate to look farther and find the ones you, yourself, know of from your experience.

Quix

I think I crossed the line last night and, if so, I apologize to all who were enjoying this discussion.

Cherie, In your last post you mentioned something

I didn't quite understand the "THAT" you were talking about. That it is complex or that some/many neuros don't adhere to it? I'd like to continue the conversation.

Cheryl, are you making the point that a plain-English version of the Criteria is irrelevant or unneeded becasue not many neuros pay attention to them? Or were you just participating in the discussion as it was unfolding?

Quix

Hi QUIX,

As I've mentioned on several occasions, the information you’ve prepared on the other subject-matter is extremely good, IMHO. In fact it is more concise then any other summaries I've run across on the net for those topics. At the risk of repeating myself, I am thrilled to have somewhere to send people that might help them understand this disease better. I mean that sincerely.

You ASKED for feedback about this summary. Knowing that you take what you are doing (in writing these summaries) very seriously, and that you went through a difficult dx process, I anticipated that any negative criticism may sting a little. That, combined with not really knowing how to verbalize what I wanted to say are the reasons I had difficulty initially broaching my concerns about this particular summary critique. However, I apologized on several occasions if my feedback upset you in any way, and I meant that sincerely too.

I feel you did over-react in your prior posting, to the point of me coming to the conclusion that it is just not worth me participating in these discussions further. You have apologized (thank you), and I accept that apology in good faith. However, I hope you appreciate that if you really want to continue to get honest assessments from others, you may need to find a way to remain objective and somewhat emotionally detached.

We all have the same goal here . . . to support and help others (from within our own abilities and perspective) . . .so hopefully maybe we can move forward with that in mind.

When it comes to a discussion about “The McDonald Criteria”, I guess what I expected was to read about “The MC”; NOT details on the much broader scope of the diagnostic procedure. For me personally, this summary just seemed to have lost its focus by trying to incorporate too much information . . .

Specifically, what I hoped to see, first and foremost, is “what the MC is”, i.e. the table (which sometimes includes a few definitions/descriptions), like these two examples:

http://www.mult-sclerosis.org/DiagnosticCriteria.html

http://www.nationalmssociety.org/download.aspx?id=214

Beyond that, perhaps what would be helpful is some elaboration on:

- why the criteria was developed; its purpose, internationally
- it’s advantages/disadvantages to dx; consistency/false negatives
- detailed definitions or explanations on terminology & testing, as it pertains specifically to those being evaluated by the MC
- the “scenarios” (as you have done) on deciphering the application of the MC
- the necessity to document/diarize neurological symptoms and “events”, going forward
- etc.

However, what I did not expect to read, at least under the title “The McDonald Criteria”, were such topics as:

- that MS is mostly still a “clinical dx” (completely contrary to the “purpose” of the MC)
- an emphasis on the necessity for doctors to spend hoards of time with the patient, recording family history, doing in-depth neurological exams, etc. (at least from the get-go)
- the acknowledgement of a “clinical lesion” (particularly in a discussion about the MC)
- that the emphasis should not be on any testing results
- etc.

I do not feel that the topic of “The McDonald Criteria” is the right place to elaborate on more subjective areas of the “MS DIAGNOSIS procedure”. I fully appreciate that those points may ultimately prove very important (at least for some people that are more difficult to dx) . . . however, what I wanted to see under this title, was only the internationally agreed upon criteria (and perhaps some explantions).

As for what I perceive to be the intended “audience” of this summary information . . .

People usually just get ‘sick’ and go to the doctor. Many with MS symptoms are afraid they are having a stroke, or have a brain tumor. They are scared, and they are ill-informed (unlike yourself, who is probably much MORE resourceful in medical procedures, testing, etc.)

Their doctor (or neurologist) might give some explanation of some testing that might be necessary, and MIGHT elaborate on what they could be testing for. Depending on the severity of the symptoms, the neuro might order up a MRI, or undertake other testing, according to the The McDonald Criteria. That is just the starting place, but it IS a relatively standard starting place.

As a patient, and if I know he is looking at MS as a possibility, I might want to know DETAILS on the testing that is required to rule in/out MS. I may either go searching the net, or asking on the forums . . . and this is where your summary could be very helpful.

As a person on the forums, who would love to have a place to send those scared people, I want something that explains (in plain English) the STANDARD criteria for dx’ing MS. I want something clear and concise, that includes only what they need to know at that point in time; what are the tests, what is the dx criteria, terminology they might need to know, and what the test results might mean to them.

At that point in time in the dx process, I am not going to want to send them to a summary on the testing requirement for MS, that alludes that “all the testing you are about to undergo is not necessarily going to tell the doctors anything anyway”. That is just way too ambiguous for a scared newbie, IMHO. They need to THINK they might find out what is wrong with them . . . or what PROBABLY is wrong with them . . . ASAP. We know that it doesn’t always work out that way for some people, but I don’t think they need to know that at least until the basic/standard McDonald Criteria testing is complete.

So . . . what I am trying to say is that I think that it would be very useful to expand on the “The McDonald Criteria”, as we know it, but that the “summary” discussion under this heading should be limited in scope to just the MC specifically.

If you wish further clarification on what I am trying to say, please feel free to ask. If you just completely disagree with my points, that is fine too . . . but I really don’t want to debate them. This is JMHO, and intended to offer constructive feedback only.

Cherie

Although this discussion doesn't concern me, since I was DX so many years ago, the old fashion way....and I'm too mature and experienced to allow any Doc/Neuro to dismiss me.. , yet, I am so glad this this thread is here..

Admit it Quix, that's why you are really PO'd....You let that Neuro dismiss you and you haven't been back to smack him..

All Newbys and Limboeers should read and keep up with the discussion here and also do their own research....and for heaven's sakes, get a Neuro who is up on things and cares about his patients. Quix is right...the other inept, unfeeling a-holes are out there.

Go get 'em Peeps..

LOL, Sally , I haven't smacked him, but I sent him a scathing nastygram! (to which he hasn't replied)

Quixxle

Okay Cherie, I see this. The topic, as I wrote it, is far more than just the MC. It includes too much subjective stuff, but not enough of it if it is going to be a thorough discussion. You feel (and I'm not sure I disagree) that the editorializing belongs elsewhere. I can try a rewrite with that in mind.

However you are mistaken about several things, and I finally see where your misgivings came from. You misunderstand what the Criteria are. They are not "about the MRIs". They build on the intent of the last 50 years in the progression of the Criteria. Before the two McDonald Criteria, there were the Schumacher and the Poser Criteria. They are all about the approach to the diagnosis of MS and, finally with the MCDonald Criteria, they "include" the way MRI data can be used in addition to the other needed data.

Cherie, you are completely wrong about the "purpose" of the Criteria. That sounds harsh and I don't mean it to be, but it is true. I have read a ton of the literature surrounding the development of the Criteria. I explain more below.


The reason I say you are mistaken is that I have researched the history of the development of the MC and they definitely DID intend to continue to state that the History and Exam is of paramount importance. I have read the full papers accompanying the Criteria. The "purpose" of the McDonald Criteria was to "reinforce the importance of clinical features, and to finally "include" the use of the MRI. They allowed the MRI to substitute for parts or all of a "clinical attack."

They base the entire Criteria on the "Clinical Attacks and Lesions" that can be documented. Only then do they tell the neurologist to look at the MRI data. So an intensive history and physical is mandated by the McDonald Criteria in order to begin the process of diagnosis of MS. The only way to get this extensive Neuro history and Exam is to do it.

Finally, the definition of "an attack" in the McDonald Criteria - Revised - which is a technical 5-Page document, specifies that for the purposes of the Criteria, there must be a "clinical lesion" found on each attack reported by the patient.

Furthermore, The first column in the chart must be satisfied before you move on to the second column. This is the way medical charts function. So you must know "from the get-go" how many "attacks" and how many "clinical lesions" are present. Those two pieces of information can only be obtained by an in depth history and exam.

Note:The consulting neurologist is going to bill from $350 to $600 for this initial service. By the laws of ethics and the legal laws overseeing medical fraud, a "Full Consultation" MUST include an in-depth H&P.

Those last 5 paragraphs were not my opinion, nor my interpretation of the McDonald Criteria You or I might like them to be different, but they are what the formulators of the Criteria intended. I can't do anything about that. To ignore that or to downplay it would be to write something subjective and inaccurate.

But, I can cut out a lot of the editorializing. Keep in mind that I wrote this with the Limbo Lander in mind. I would have to redirect MY purpose in writing it. I certainly could have two discussions, very similar in content, but one with the emphasis where it needs to be for people whose evaluation consisted of 3 or 4 tests on the exam and a piddly history. Several members of another forum had a "full consultation" (as noted by the billing code) who were never touched by the doctor! This is not only medical fraud, malpractice, but it is illegal and lousy medicine.

Before, we digress into another discussion of whether this often happens, I need to know that you see the point I am making about the necessity of a thorough H&P, and of the true importance (to the developers) of the "clinical lesion." Because, if you maintain that the "purpose" of the Criteria does not include those, we have no basis for discussion.

Why don't I try to boil down the article, remove the editorializing, and try to make it more succinct? It will still contain the information of the intial importance of the history and exam. I am also going to post a thread with the article I wrote on the History of the Diagnosis of MS. That might give everyone a better background.

I WILL maintain my objectivity as this goes forward, I promise!

Quix

I understand your points, QUIX, and appreciate that my explanation of what I "expected" would come across as extremely black and white (with no consideration to the history of MS dx, etc.).

I was really just trying to back up the discussion to try to make my underlying point clearer; that what I'd like to have seen, is this more from the perspective of a suddenly sickly person (vs. the frustrated person who's been put through the wringer with their doctor already . . . WAY over-dramatizing that point too, but I hope you know what I mean).

There are so many ways that people can present with MS, but one thing I know for sure . . . doctors seem to HATE when patients come in and think they've got it all figured out already. I'm sure that doesn't happen very often, but it does happen. I suspect the "traditional" way people present is just plain scared, with very seldom the thought of MS (isn't that the Jerry disease?) on their mind.

In my case, for instance, I thought I was a perfectly healthy person until I became paralyzed over a week or so. In retrospect, I had had symptoms of MS for years already, but never connected them to that incident until YEARS after the dx . . . And, even though MS is very prevalent here, THEY did not appear to approach what was happening to me from an MS-angle at all either . . . well, at least I had no idea that they were.

They did X-rays of my spine (I lived in a ski village), they asked about recent viruses I might have had, they tested my "numbness" with pins . . . all the usual stuff for "spinal injuries" and mennigitis-type stuff.

Eventually I landed in the city emergency, and was admitted for a series of tests, including an LP/Myelogram, some visual thing . . . lots of poking and prodding. Since they botched the LP in a very bad way, that left me in the Brain Trauma Unit, completely K-O’d for a further week. By the time they got around to even suggesting a MRI . . . I BOLTED (well limped terribly bad)!!

When I saw the neurologist a week or so later, she mentioned transverse myelitis and the likihood of MS or a virus that got into my CNS. Her final words were "time will tell". It was 12 yrs before "time told" . . . and it didn't happen to matter to me because there were no drug options available or recommended anyway.

My point is only that things do not usually fit into a nice, neat little package . . . as we all know that . However, I think no matter how we present (paralyzed, blind, or weak), and depending on how serious our current condition is, (perhaps combined with a detailed history, if we can talk) . . . they put us through a series of objective tests to see if it MAY be something else (first), or MS (last). If it comes down to leaning towards MS, at a minimum, we should have all the testing associated to the MC.

I realize you approached this from a limboland perspective, and that’s what didn’t feel right. I just feel the MC section is what it is (whatever it is), and nothing more.

Anyway, I think that's all I have to say about this (for now anyway). Everything I've said has been over-dramatic, without consideration for the history of MS (I know, they used to just put us in hot water, then called it "hysteria" when they figured out what was wrong ). I'm just suggesting to keep this MC summary simple and concise, like you have with everything else.

Cherie

Hi there Quix. I have stood by and taken in all that you've said, and I'm very grateful to you for explaining things so that everyone can understand. I'm another with a nursing background so I have no problem with the language that some use, but it does worry me when sometimes posters allow others to get bamboozled because of jargon. Thank you for not doing that.

I have no problems with what you've said so far, and the discussions that have occurred but I would like you please to qualify the statement that you said in the highlighted quote above.

I ask you to remember that on this site, we are all people with MS, or people waiting for a diagnosis that may well turn out to be MS. None of us profess to be professionals or specialists in the field of MS in any way.

Thank you.