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 -
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.
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.
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.
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?
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