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