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. :D

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...:grouphug:

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. :hug:

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.

Sally,

I have been "over dramatic" (excited!!) about QUIX's write-ups, on all of the subjects so far. I am thrilled I have a place to send people to now, so they may better understand the disease, and appreciate QUIX's simplicity on subject-matter.

I just had a heavy feeling about THIS one, and thought it ended more complicated then "The McDonald Criteria" needed to be (IMHO). I so appreciate how QUIX has made topics so simple . . . I just didn't get that from this particular one.

I could have kept quiet (and perhaps I should have) . . . but that's never been my style. ;)

I truly meant no harm though . . . just food for thought. :o

Cherie

Great points, Cheryl!

Cherie

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.

A lucid moment today! ;)

Cherie, I didn't feel bad or angry in any way, nor did I discard your opinions. I merely disagreed with some of them. I know this forum has come to love your expressions and your opinions. They should never be kept quiet, but we both have be ready for disagreement

As to the complexity of it when my articles are usually simple, I can't agree with you more, Cherie. The problem is that I knew last summer this topic needed explaining. I sat down more than a dozen times to distill it. I gave up every time until about a month ago when I realized that it is a complex topic that I do not know how to make simpler except with a lot of words in plain English. This was absolutely the hardest thing I have ever tried to write. I all but sweat blood over it.

Each time I tried to distill it, I lost critical defintions and critical meaning. If it can be simpler, than this is where I am asking for help. There is a chart which should go with it, but many people have told me it makes their heads spin. It still needs to be included, but I haven't made the table yet. I was just going to take the table from the NMSS website Tipsheet.

Okay, so I am using you guys as guinea pigs. I thought Cherie gave me some good points within the scope of the article about focusing the beginning with a statement of purpose.

Where else can it be improved? Afterall, I was never a writer. I did have to give spontnaeous verbal explanations to parents on stuff and I got good at making most things somewhat understandable. But, I tend to be wordy and get off-topic. Maybe we can edit the darn thing. I could repost it here in the middle of the thread, then we could edit it. I would use different colors for the changes and we all could see when it was clearer. If it got good enough maybe you would want to stick post it to the top as a resource.

It strikes me that I am smart and most doctors are smart (though I seem to run across a lot of them who don't access their "big boy brains" very well.) If I had this much trouble explaining it, perhaps many neurologists haven't put out the effort required to do it. I have heard at least a dozen time that some neurologists believe you need "9 brain lesions" to diagnose MS - a brief reading of the Criteria shows this to be false, but they say it to us nonetheless!

Alternatively, would one of you write a plain English explanation of the MC? That would probably be even better.

Quix

I understand your points, QUIX.

Maybe I just need more time to think on this one, cause I honestly have not tried to before . . . except as the questions/panic/frustration, etc. have unfolded on the forums.

My sense is that the first priority might be to determine the audience for this information . . . then, simply, what does THAT audience NEED to know?

I appreciate there are exceptions; there are more open-minded specialists; there are people who get a dx without fitting this criteria . . . but if that information is provided in this section, perhaps it could be in a "beyond the McDonald Criteria" section.

I don't know . . . like I said I should probably think on this more. I don't know the answer, I just know when something doesn't feel right. My intuition in this regard is fairly reliable . . . even if the problem ends up being much less significant then the way I view it initially. :p

Cherie

Cherie, this whole thing is definitely getting weird. Your choice of words really is dramatic and full of dread and potential disaster, as if the wrong person reading this would truly be injured. This is totally beyond my comprehension. The use of expressions like

Your really think this is a time bomb or something!!

This just seems dramatic. Was it like a feeling of doom, perhaps?

Is it really that damaging? Wow... I guess the solution here would be NOT to refer people to it.

Cherie, I attempted to open a middle ground to address those of your worries that I thought actually pertained to a limited topic, and you ignored them all. I am losing any further desire to address your very severe unease about a "factual" topic. You continued to express the doomy feeling:

.

I guess I have a greater belief than you do that people can evaluate information on their own. I WILL relook at the whole thing to see where I may be luring people into something potentially harmful. But, in all honesty, I don't believe that people generally need that protection. We are all adults.

I am at a loss here to understand your tone about the article. That leads me to think there is something else on your mind. If there is another topic (that causes you to feel this way) and you're are unwilling to share it publically, you can always PM me. I've been getting a lot of those recently. I might as well hear from you.

Completely baffled, Quix