very interesting post, thank you.

can i ask if you're a radiologist or md?
just curious.
i don't think we've met.

I am an MD, but not currently in practice. I was Dx'd with RRMS a year ago and have been studying it since. I hope I can ungarble some of the technical info (putting my own spin on it, of course).

BTW - You stole my signature!

Quix

I've seen two neurologists -- my one at home and one at the Mayo Clinic. The Mayo doc. said that the black holes show that my brain isn't healing well (doesn't have the capacity to repair) so he suggested starting aggressively with Rebif (highest dose interferon) even with CIS and mild symptoms. Unfortunately, I could not tolerate interferons or even copaxone. I am switching to a new neuro at the MS clinic in my city in 2 weeks. I'm not sure what the next step is -- maybe Tysabri? I dont' know if they will give T. to someone who hasn't technically had a "relapse." But as I said in an earlier post I had T2 lesions, 2 enhanced lesions, and some black holes on the initial MRI. Maybe that combined with not tolerating the other DMD's will make me a Tysabri candidate?
Thanks again for the info.

Definitely NONE of the above!

Thanks very much for this excellent presentation.

You wrote: "[An attack] also does not include single paroxysmal events (sudden jerks, brief loss of vision, single spasms of a muscle, a single bout of dizziness). If the single event occurs mutliple times over a period of more than 24 hours it would qualify as an attack."

If that second sentence is true, then I certainly HAVE had attacks, quite a few of them! (Not that it made any difference to the neurologists I saw back in the way old days when I was still seeing neurologists...) I also had other things that lasted weeks or months that I would consider an attack but that they could not see (or did not try hard enough to see).

Quix, I am sure your outline above will help a lot of people understand their situation better. Thanks for taking the time to do that. Good for you!

Nancy T.

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

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.

oh ps...

you can still use the line.
it'll be twice as good.

or, do you have another fav thought from desiderata?

sorry for your dx.
welcome to NT.