I completely agree with you. We can't change the way some neurologists make their diagnostic decisions. And the result of a lot of those decisions leave us in a wasteland. But, if we already know the pitfalls, and the way they should be analyzing the information, we are better able to fend for ourselves. We can dump the defective neuros earlier and guid the wishy-washy ones with pointed questions.

As to whether these Criteria are hard and fast, you will get varying answers to this. It is stornger than a Guideline, but weaker than a Federal Law. Generally Criteria are more to be followed than not. Neuros with less confidence and skill will be "safe" if they follow them rigidly. They will be able to defend their decisions if challenged. Truly smart, skilled and confident doctors know when they can see a wider picture and diagnose outside the Criteria.

The "problems" of diagnosing outside the Criteria are 1) a weaker defense if challenged, 2) some patients won't qualify for certain studies, 3) certain meds may not be approved, and 4) potential problems with insurance.

Someone said recently that Neurologists are often linear, mechanical thinkers. A person may qualify for diagnosis until the MRI is atypical. Then, that supercedes the earlier information. We should attempt and look for the non-linear thinker who can think and evaluate laterally - seeing a global picture that shows the diagnosis, despite varying from the Criteria.

The upshot is that we can't know when we have been snookered without good information. I do believe there is no such thing as too much information.

Quix

Hi QUIX,

The McDonald Criteria is fairly concise, and usually presented in a table (as you mentioned). Admittedly, it probably wouldn't make a whole lot of sense to most people (even some of our neuros, apparently). . . so perhaps THAT is what I hoped you might be specifically addressing in this particular topic summary.

That is the gap that I see as missing from most MC descriptions on the net anyway.

There is no drama, dread, potential disaster, or fear of injury. Also no doom, damage/protection warnings required, or a lack of faith in people’s good sense. There is nothing more to my points then what I've already said . . . and actually a lot less then what you seem to have interpreted from my postings.

My comment ‘that the problem is probably much less significant then the way I viewed it initially’, was meant to convey is that whatever is ‘nagging’ at me, is likely not as significant as I may have portrayed it initially.

In your last posting, you asked for more feedback, and had suggested that you might re-post the summary for that purpose. At that point I said that I need to think through this topic more, especially if I hoped to be able to offer constructive feedback.

I did not “ignore” anything you said . . . I believe that I appreciated your points and was trying to find a way to incorporate them into my interpretation of this material.

Cherie

Okay. Quix

This is way over my head and very confusing. But I did want to jump in and say Quix was so helpful in encouraging me to continue to look for an answer in my situation.

The medical part of the information is out of my realm of understanding but the time line and other suggestions she gave helped guide me in the right direction.

I had Optic Neuritis, an abnormal MRI, other symptoms, and a family history of MS. Yet two of the three neurologists said it was not MS.

The 3rd neurologist I saw was an MS specialist and I was diagnosed the first time I saw this doctor and started on DMD's. She was outraged about the fact that the other two neurologists just passed me by.

Quix gave me the courage and knowledge I needed to make sure I got the attention I needed. I did not know for sure that I had MS before I went to the MS specialist, but I knew I had SOMETHING going on.

Anyway, thanks Quix for all you are doing!

LATW (from Medhelp board)

Hi folks~! Been trying to keep up with this post..so a BIG thanks to QUIX and Cherie for keeping this going.

First of all, are you both diagnosed or in limbo??

Since 2004 I have been seeing a MS specialist and his staff,(his PA). The MS neuro bascially ruled everythign out then and told me he'd "treat this as MS" HE then proceeded to walk out the room, so I hurriedly "ran" after him and asked what should I do? He told me to call him if I went numb? Hmmm.. He continues to monitor me and treat my symptoms. He thinks my neuro exams are "good." Hmmm..

I DO have lesions, over 20 lesions, some are periventricular ( and other areas of the brain) for example, but "not typical for MS"

I do have brain atrophy, neg LP, Pos EMG (just recently for CT) Neuro exam is always "good" according to them, even tho I never could do the heel to toe or not fall over, but that HAS improved since seeing my guru of a nutritionist. He likes the work my nutritionist has been doing.

The MS neuro has treated me with oral prednisone 2 times for cognitive problems. THAT is my biggest concern, COGNITIVE/SPEECH, MEMORY problems as that will cause me to lose my job.

I am a drug and alcohol psychotherapist and I told him I have to be able to stand and not sway of fall to the side, AND I need to speak without slurring or stuttering, making incorrect statements. PALEEZ !!!

Otherwise most of my symptoms are sensory, tingling,nunbness (never really going numb) buzzing in my legs almost constantly, electrical shocks of pain down my legs, SPASTICITY FOR YEARS, and now I think that is what is causing my back to "lock up" and spasm so bad that I cannot BREATHE at times.etc.

I have yet another problem that they think is more serious, I see his assosicate who ruled out my brain tremors were NOT seizures. I get intention tremors that wake me up and only happen when I am sleeping or about to fall asleep. AND I get them in my right leg but you cannot SEE them.

The Seizure/narcolepsy neuro I see for this said, I believe that you believe you have these tremors that are not visible to the outside, only inside. He was trying to support me. He's really trying to get me a diagnosis. He thinks I have narcolepsy with cateplexy and now learned I do have sleep apnea.

However, most seriously, I get these autonomic problems, where my blood pressure, heart rate suddenly go up, I become weak and eventually feel as if I will consciousness. Sometimes I just need to rest awhile, but many times I have ended up in the ER or admitted presenting like I had a TIA. Couple that with the inability to walk straight esp on my right side I get admitted.

NOW he's working iwth the possibility I have narcolepsy with cataplexy because even tho I cannot always remain ALERT, or cannot speak, I CAN HEAR.
Odd eh?

One of my Rheumies and myself, think its an autonomic dysfunction. ONe of my last MRI's was suspicious for a lesion on the PONS that was not there before. Could it be possible that its from a lesion on or near the brainstem?? I am going to ask the MS doc.

I see the MS doc next week, and the Narcolepsy neuro tomorrow.

ALL have said its NOT MS then the MS doc told me last year, "I never rule it out." HE's willing to treat my symptoms and wants to monitor me closely becuase of these weird autonomic stuff. HE told me via his nurse over the phone that its NOT autonomic dysfunction..yet MY GUT tells me it is...

I'll ask about my MRI...he'll prob order another. I told him it takes me all year to pay off these bills so he cancelled the MRI last year. He DOES take me seriously.

Would love any input. Anything else I should bring up?
I told my other neuro that the tingling in my face has returned after 4 years, the buzzing and electrical shock pain in my legs is daily and he told me I needed to see the MS doc and he'll order another EMG but this time of my legs

Thanks and take care.. I appreciate you all

Warmly, Jan

I feel like Quix's article was written just for someone like me. I have been having problems for 8 years. I have only been seeking a dx for the last 4 years, though. However, after 4 years and seeing 4 neuros and gads of testing, the clinical picture of my problems has lost it's focus.

I think that the longer you languish as an "atypical" case, the more you just become the sum total of your test results and the less the neuro sees the whole history and clinical presentation.

Reading this and having dialog with Quix has made me see this. Now I realize that I either have to refocus my current neuro or I have to find one who is willing to look past the last atypical or equivocal test.

I am one who has an abnormal but atypical MRI. I have NEVER had a normal neuro exam. Perhaps this information is not for the person who has all normal results, but it is certainly for those of us with abnormal but atypical tests / exams. There are people who have problems but who still have a totally normal neuro exam and normal test results. Those people would not need this information at all.

For me, I was astounded to learn that many of the neuro exams that I have failed should have offered useful information to the neuros regarding lesions in the CNS whether or not the MRI could see them. I even had a neuro tell me that he knew there was a lesion in the spinal cord based on my neuro exam but that the MRI didn't pick it up because the spinal cord is hard to image! This article was corroboration of that.

Drat now I don't even remember what I was really here to state, but this information has given me insight to at least try and start over with my neuro rather than just sitting in this holding pattern. I had totally given up a year ago and figured that there would never be a clear answer possible for me.

I may not get an answer, but at least I am going to try.

I am not advocating changing how our docs dx us, nor am I advocating doctor shopping. I also don't think we are in a medical wasteland. However, knowledge is power and the more we know as we go through the dx process, the better we are.

We are not medical professionals. We are patients seeking help and therefore lean on the professionals to know what they are doing and how to interpret the results. Again, knowledge is power. But when we go in for the first time, scared and not knowing what's going on, we have no knowledge.

Doctor shopping is sometimes difficult depending on where you live...even some have mentioned that they cannot switch docs within the same practice.

We are there to be helped, not to guide. There comes a time when we should work with the doc, but to start right out in the beginning with an "in your face" attitude does not lend itself to a good doctor/patient relationship.



Guidelines are guidelines and should be used as such. I agree that some docs probably follow these Criteria, but I am willing to bet that if you were to do a survey, not very many keep a copy of the MC on their desk or in the exam room to refer to when examining a patient.

I don't believe that dx'ing outside the MC is critical for insurance purposes. I also don't believe that my insurance company asked my neurologist when I was dx'd "was she dx'd using the MC" and if so which box did she fall under.

The MC is just that, a guideline that they use, not a rule that must be followed. It gives the docs a starting place. They have to have one otherwise where would WE be?

I also don't think there as many people who get snookered or there are as many bad doctors as you are alluding to. That's just my opinion based on my association with the organizations I belong to and the background I come from....FWIW...

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

I think I crossed the line last night and, if so, I apologize to all who were enjoying this discussion.

Cherie, In your last post you mentioned something

I didn't quite understand the "THAT" you were talking about. That it is complex or that some/many neuros don't adhere to it? I'd like to continue the conversation.

Cheryl, are you making the point that a plain-English version of the Criteria is irrelevant or unneeded becasue not many neuros pay attention to them? Or were you just participating in the discussion as it was unfolding?

Quix

Hi there Quix. I have stood by and taken in all that you've said, and I'm very grateful to you for explaining things so that everyone can understand. I'm another with a nursing background so I have no problem with the language that some use, but it does worry me when sometimes posters allow others to get bamboozled because of jargon. Thank you for not doing that.

I have no problems with what you've said so far, and the discussions that have occurred but I would like you please to qualify the statement that you said in the highlighted quote above.

I ask you to remember that on this site, we are all people with MS, or people waiting for a diagnosis that may well turn out to be MS. None of us profess to be professionals or specialists in the field of MS in any way.

Thank you.