Nurse Nancy, We are kindred spirits! I was a pediatrician and often sweltered under the warmers - that was before MS. I can't even stand my home over 69 degrees. Thank God air conditioning is tax deductible!

Quix

AC is tax deductible???? really???? how come????

mine is already on as it's 85 degrees here in denver, 90 on Wed.

Judy

I think it depends on the State. I know in Idaho it's not. I've asked.

Av8rgirl is correct. I couldn't find data on a federal deduction, but many states do have one or a tax credit. Phooey!

When I had Major Med Insurance, I understood it was covered, if, your Doc wrote a prescription for it.

I knew someone with MS, who had an outdoor inground pool covered by Insurance. No kidding.

You hit the nail on the head Keri. As has been explained to me several times by several neuros, it's subjective! And not all patients present the same. The docs have to think outside the box...some do, some don't. Some can't for insurance reasons (think HMO!) and you have some skittish docs that are gun shy and have forgotten how to treat "the patient."

I am thankful that my neuro treats "me" and I get good quality treatment. When I failed all the conventional tx on the market, we put our heads together and came up with options that would work for me. That's how she treats all of her patients. I know this b/c I know several of them.

That's why I am in this clinical trial b/c right here and now it's the best option for me...nothing else has worked.

I may have fit the McDonald criteria in 2001, I don't know. We never pulled out the chart and checked off the boxes to see ... oh my! does she fit in this box! I have never been one to fit any "one size fits all" charts or dx or treatments. I am what a lot of my docs call the 1 percenter.

But I do know that when I applied for the clinical trial, there was a very strict protocol for admission and I had to be re-diagnosed and I fit that box very nicely.

And that was 6 years later.

Thanks for the information Quix...it's good to have it broken down for non-medical people to understand. But maybe the docs need to understand that we do know what we know too!

Sally

My doc said that she could write me an rx for a therapeutic pool and my insurance would cover it. I thought long and hard about it b/c I would love one. I talked to my insurance company and they would have paid 50% of the cost. But they also said that it would be cheaper if I would join a health club and they would probably over ride the recommendation and tell me to try that first. They would pay for a membership.

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

Hi, Cherie. I think you have misunderstood my intent in writing this, but have likely brought up something that I need to incorporate early in the piece. I am surprised that you had such misgivings about the piece, because I know that it has a place in the stuff that people along the way need to access. At some point, and I knew you have such people here, those who have been dismissed by lazy or ignorant neuros need and want to see the criteria that "damned" them.

This piece was already epically long and I was trying to keep it more directed.

Q

BUT,
Let's all talk about the way this piece is prefaced so that it is clearly for the person [I]very[I] far along in the diagnostic process - a true Limbo Lander.

Given your concerns, it seems I need a brief, but very definite, statement in the beginning that states that the person who is just starting on the road of suspicion of MS needs an extremely thorough history and neuro exam, an initial set of MRI's, and exclusion by testing of the mimics of MS in general, and an exclusion of specific mimics by special testing that might include EMG/NCV, EEG, lumbar spine films or MRI, evaluation by a rheumatologist, etc.

I agree, The McDonald Criteria should not be used early by someone to self-diagnose. It is too specific and technical and is too strict in its definitions to be used by someone who isn't already diagnostic "waste."

Or do any of you believe that a layman's description of the McDonald Criteria should not be available at all to people?
Quix

The following is an edit:

Wow! I just read your whole comment and I have to disagree in several places.

[QUOTE]- are just starting the dx procedure[/QUOTE]

I do not think that people early in the dx process need to be worrying about the MC. That is for their neuro's to tease out, because that's their job.

[QUOTE]- want to know alternate dx possibilities [/QUOTE]

The McD C has nothing to do with alternate Diagnoses, thus, this would not be a suitable place to look.

I disagree with several things here. Many neuros do lean heavily on the clinical part, and those are the one's we need to be seeing. On forums such as ours we see a skewed view of what "usually" happens in the Dx process. The people who are diagnosed properly or easily often do not seek out a forum, having had no difficulty with the diagnosis. If they do, their interest in the diagnostic process is less passionate and they may read, but not post. Some will offer their experience, but it is the exception.

I believe the rigid-thinking Neurologist is NOT predisposed to become less riged and more open to the possibilities as he is proven wrong in his initial thinking. That is not how this type of physician reacts in my 23 years of interacting with them. They are generally less and less likely to admit their initial path was in error.

I know people four, including myself, who were diagnosed with negative or atypical MRI and LP findings. I had only one misplaced, small, frontal lobe lesion when I got my diagnosis.

Yes, the statement that doctors tend to place disproportionate weight on the MRI and LP is necessary, but the topic of the McD C is to explain them not to explore all their misuses.

Oh, Cherie, I can't diagree with you more! I realize this goes back to a fundamental difference in the opinion we two have on this subject. But, in my experience, both on a forum and in medical practice, KNOWING that something is wrong, but having the door slammed on them dashing their hope is devestating to every person I have encountered except you, though I will give you that there are likely many, many more. People in this situation are pressed into despair and their hope is taken away. The increasing symptoms constantly remind them of their hopeless state, either forcing them to consider that they actually are crazy or that they will die without anyone acknowledging their pain and disability.

Where I come from, we have had more than half a dozen, realize that their there are different doctors and different ways to approach the diagnosis - who then have proceded to get a diagnosis! You are the only person to whom I have ever spoken who would prefer to accept KNOWING that you have something wrong and NOT knowing what it is. I believe that most people prefer a named enemy than an unnamed one who is stealing their life and abilities.

The good neurologist will help counsel those whose bodies do not give up the evidence and assure them they will continue to look and monitor over time. I believe it is worth the effort to seek out these docotrs, but they are not few and far between. My friends have eventually found them. It is easier to live with the frustration of no diagnosis when you have the validation of a doctor who believes you and will continue to search. I believe this with all my heart.

I've run out of time here to discuss all the other things I read in your post but, please remember, that wanting to have all these other topics discussed is actually wishing there was a book, written in plain English by someone who understands the technical stuff, so that everything is complete. That is a worthwhile desire and possibly a goal.

What I am doing is getting around with limited energy to writing on "topics" that are necessarily limited in scope. The discussion of MS Mimics and other diseases with have O-Bands is not appropriate in a topic called The McDonald Criteria. Nor is a discussion on the UNnecessity of an LP. Though it is probably worth pointing out that the McD C rarely require an LP. The diagnosis can be made without one and OFTEN IS.

Perhaps there should be a companion article recommended which does discuss some of these things. All I attempted to do was explain the McD C - not to justify the way they are used. Even so, if you read my article you will see how much emphasis I put on the History and Neuro Exam and by, the way the McD C are formulated how much the authors of it placed also on the clinical signs.

I will agree that the article could use some qualification as to what it is and who might benefit from it. But, at some point people will look up the McDonald Criteria to see what it is about - and it is hard reading.

Cherie, I reread my answer to you and misspoke. I know you would not "prefer not to know your diagnosis." I realize that your stance on this is that if you were who remained without a diagnosis for a long time, you were prefer not to constantly agitate for one and be frustrated that it isn't coming.

Sorry, I was writing quickly. But, I would still like your's and others' input on how to make this topic of "The McDonald Criteria - in Plain English" better oriented to the people who could actually benefit from it.

My expanded answer was not to shoot down all that you said. I'm sure there are things that would make its limited purpose more clear. And clarity is what it needs.

Quix