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