What about black holes? If a person has CIS and the MRI comes back showing T2 lesions, enhanced lesions, and black holes (like me!) isn't that a dissemination in time even without a second clinical attack?

Thanks Quix, good post.

I think it would be a good idea for all of you limbolanders to make a copy of this and hand it to your Neuro, when he/she, somehow, conveys to you, or writes a little note in your records, that you find later, that it's all in your head.

That's what I was thinking when I read this yesterday...I have two attacks and two lesions. What more do they want? Oh...I know...my arm to fall off

I'll just wait it out until the next time

No, no GJ, we don't want your arm to fall off! Take the nice doctor two all-beef patties with special sauce, lettuce, cheese, pickles on a sesame seed bun, to help him recognize the McDonald criteria.

First, Twinkle - that was funny!

Second, Quix, thanks for the post. I have seen the chart many times...and each time I see it, I am reminded that I do not fit the criteria for MS - according to McDonald.

I was diagnosed the first day I went to the neuro in January. I thought I had a pinched nerve in my face....neuro originally told me he thought that I had had a stroke (I was 31)...he sent me immediately for an MRI and MRA. He called two hours later to tell me that I had MS. No probable, no possible...it was definite.

There are times I just wonder why some people have such a hard time getting a diagnosis. Of course, I'm not a neuro. Part of me wishes my dx did not come so "easily" or quickly....but then again, I started copaxone 10 days after my dx....and stopped that and started Tysabri and have had two infusions so far. My current goal right now is to be seen at Johns Hopkins for HiCy. I have been told that I'm a solid candidate and am now waiting for my initial appointment to go meet the docs.

Anyhow, I digress... my main point, I think, was: why do all neuros view this differently? I know the dx of MS involves many factors and there is no one test to dx it definitively.... it is just so strange sometimes. I think, well what if I had one of the doctors that some of the limbo-landers had? I'd probably be w/o a dx right now... and that I would not stand for....I dunno. It's just crazy.

But then again...I have holes in my brain, so what do I know?!

~Keri

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!

Am I just in a hilarious mood, or are there really more hilariously brilliant posts here than usual tonight?

Excellent memory on that jingle, Twinkletoes, although I think there was an "onions" after "pickles," n'est-ce pas?

Can you imagine a National Limbolanders Take Your Doctor a Hamburger Day, when we'd all march into our neuro's office at lunchtime with a McDonald's sack and ask them to go over the criteria for us? (Otherwise they won't get their hamburger, and then they'll be really sorry.)

Hey, if pharmaceutical reps can get the doctor's attention by bringing in free food, why not limbolanders too?

You know what? I think we patients should make up our own criteria with respect to doctors.

1. Doctors' thinking about the patient's case must not be disseminated in space and time. In other words, doctors must not be spacy, and they must be timely in their diagnosis.

2. A minimum of nine doctors in five separate locations are required to confirm a diagnosis of "the patient is just nuts." At least one of these doctors must be a psychiatrist.

3. A lumbar puncture is not required. However, it may be allowed if it makes the patient feel better to punch the doctor from behind as the doctor hurriedly leaves the room.*

*Just kidding, folks! I do not advocate violence!

I'm sure there were more criteria; can anyone think of the rest of them?

Nancy T.

thanks for sharing.
i understand your posts (but others may need some help). i've been an RN for 37 yrs.

dx'd rrms to spms 5 yrs ago. had to quit working in '05 because of cognition and mobility issues. i worked in the NICU and was always standing under open warmers. way too hot and made me into a wet noodle.

looking forward to more of your posts.

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

Natalie, the Black Holes are seen in the T1-weighted images. They are the accumulation of areas of direct axonal (nerve fiber) degeneration. These correlate very well with both the accumulation of disability and with brain atrophy. Interesting enough, they are not so much the product of the inflammatory demyelinating and remyelinating lesions. So the Black Holes are NOT just the progression of the T2 lesions that the neuros talk about.

Quix