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