My neuro won't let me obsess about numbers - when I ask about how many o-bands I showed in my spinal fluid, he just tells me "more than 3." They are still using the old counting system.
The Mayo criteria looks for 4 or more, which is part of our hold the Mayo discussions here. Their criteria is stringent and outside of what the McDonald criteria reads. And McDonald does not require any o-badnds, at all.
be well, Lu
The technology is better and more o-bands show up so that may be why they count 3 or less as negative. It is really up to your Neurologist to interpret with everything else.
I am really confused by this. Maybe I've just read the information incorrectly? But I remember, in an article about the new technology (IEF - isoelectric focusing), they were comparing it to the old method (agar) and they said that IEF causes LESS false-positive results - like using the agar method, a number of their test subjects came up with up to two o-bands, and when these same people were tested also using IEF, they had zero o-bands.
Hmmmm. I do know that IEF is also more sensitive in general - like, someone might get four o-bands using the agar method and then at the same time they'd get 10 with IEF. So, maybe, the problem was the old method gave lots of TOTALLY false positive results (like, those one or two o-bands were nothing but a lab error for some folks?) whereas IEF is much more accurate, to the point that it's way too accurate, picking up o-bands that are not clinically significant. That's my best guess, but I don't know! The lab report told you just "three or less"? Seems weird they wouldn't give you the actual number, since they have that information...
I know there's been some debate on these forums in the past about the Mayo Clinics "four o-bands" rule. Hmmm.
This sounds frustrating - I am sorry! Wishing you luck -
No one ever told me how many 0 bands I had, just that my CSF tested possitive for 0 bands consistent with MS.
All I know is they poked more holes in me, took a bunch of spinal fluid and a bunch of blood, and a week or two later my dr said AHA, 0 bands.
Wish I could be of some help...good luck to you!
What I have been told is you might of had two o-bands with the old test and four with the same new test because it is more sensitive. I had 12 o-bands on the Mayo test.
You can have 0 o-bands and have MS.
Which Mayo did you go to? They used to diagnose regularly and you could count on Mayo for honest answers. But in later years, from what I have read generated by others having gone there, Mayo has not been liking to diagnose much lately, and has even been known to cancel out an established MS diagnosis of patients going to there.
As someone having consulted with the Mayo neurology department on their main campus in Rochester a couple of years ago, I am part of the growing "Hold-the-Mayo" crowd. My feeling is that I basically just provided experience for their student MD who examined me and did my workup (rather than the person with whom I had the appointment who only came in later to do the final touches). I did not feel heard there or even properly evaluated.
The Mayo facility in Rochester is beautiful, kind of a marble palace. Prominent are the many cashiers ringing up the tremendous amount of money coming in from their patients there. It's a great place to visit as a tourist, take photos, and then leave.
An afterthought: Hey folks, get ready . . . we are fast approaching a very relevant holiday to Kelly97's post . . . .for soon it will be . . . . "Stinko de Mayo"!!! Yes!!!
Reading this and the link provided along with other research, it seems that in order to reach a valid diagnosis, both CSF and serum must be tested, correct?
I had an LP in 2003 where only the CSF was tested. No blood was drawn. Neuro said no MS. New neuro said that it was too early in my history for an LP to be conclusive.
On Tuesday, I am scheduled for an LP with three specific tests ordered. I'm not sure what the other 2 are (probably Lyme and B vitamin deficiencies), but am fairly certain one is for MS. If they don't draw blood, how should I handle this? My thought is "Would you please call the neuro for clarification?" if they don't immediately respond in a positive way.
Maybe I was too harsh about Mayo. To be fair to Mayo Clinic, I do think they do have some very good doctors there, maybe it's just hard to get a neuro diagnosis - as it seems to be most other places in this country - so what's new?
I did really think the Mayo radiologist who looked at my films was excellent - he found a couple of things the original outside radiologist did not notice such as brain mass loss.
Also really liked a couple of the other MDs there - the one who did the EMG/nerve conduction study and one of the other neurologists.
Unfortunately, I didn't get a diagnosis, but then I was only there briefly - did not go for the full 7 to 14-day workup.
Yup. Insist they draw blood. They NEED the blood for comparison.
Good luck with your upcomming LP.
Most LP samples are sent to the Mayo Clinic. Mine was sent several places but that is the main one.
My LP sample was sent to the Mayo Clinic from Colorado. I'm not sure which one of them, though.
Where do I find me info on this "Hold the Mayo" and the McDonald thing. Can anyone fill me in on this info. What are the standards for certain symptoms in MS diagnose. If Mayo says it needs to be 4+ what is other clinics standards? Anyone know?
In the upper right hand of this page, you can see the search function. As "Hold the Mayo" was the thread's name, it comes up first. But here is is without the need for search:
Info on the McDonald criteria can be found on our Health Pages, located at the very bottom of the page. These are a great resource! But the quick links are here:
For all of the Health Pages: http://www.medhelp.org/health_pages/list?cid=36
Specific to the McDonald Criteria : http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
(Bear in mind, it's probably been revised since then)
I saw your note and have started a new conversation thread on diagnostic criteria- you can read it here
I hope this helps - it can be incredibly confusing to understand all the possibilities.