To keep these references together, here is the Mayo Clinic explanation, which is different than pretty much any other lab -
"A finding of 4 or more cerebrospinal fluid (CSF)-specific bands (ie, bands that are present in CSF but are absent in serum) is consistent with multiple sclerosis."
They list the reference value for this test as fewer than 4.
BUT Mayo explains that their numbers are found through a different testing method -
"In early 2003 we compared the isoelectric focusing (IEF) assay to our previous high-resolution agarose assay as well as the cerebrospinal fluid (CSF) IgG index. The IEF assay requires a smaller volume of CSF and is easier to interpret than the agarose assay. Concordant normal specimens usually had zero bands by IEF but 1 band by agarose. The concordant positive specimens had an average of 11 bands by IEF and 2 bands on agarose.
Among 19 cases of definite multiple sclerosis (MS), the IEF oligoclonal band (OCB) assay had a sensitivity of 95%, the agarose assay had a sensitivity of 63%, and the CSF index had a sensitivity of 74%. Among 57 consecutive non-MS cases, the IEF OCB assay had a specificity of 95% and agarose and CSF index assays had a specificity of 97%. These data demonstrated a 32% increase in sensitivity and a 2% decrease in specificity for IEF."
The Utah info is as clear an explanation of the process as I have seen. We often say that there are many other things that could cause MS like symptoms. The Differential Diagnosis section lists many of them and it is a LONG list :-)
The Utah info is also tabbed so you can see additional procedures, test values and other info needed for the bigger picture. Glad to know you saw it and agree.
My CSF was sent to that Utah lab. I'm one of the negative ones, though my IgG index was borderline increased.
Great find, Lulu!
I had a LP 10 days ago. My neurologist said the results take 2 months and my next neuro appointment is in beginning of May. Did all your results take that long? She said it's because they go to the Mayo Clinic. The radiologist doing the test said he took 12cc of fluid because she ordered a lot of testing. Maybe that's why it will take 2 months?
Mayo Clinic could well take two months due to demand. My results (outside of the US) took about six weeks. It depends on numerous factors, but two months doesn't sound outrageous.
Word of warning: around here people say "Hold the Mayo". They have what many believe to be an necessarily high range of unique CSF oligoclonal bands (≥ 4) for an o-band result to be considered positive. Many other labs and facilities use ≥ 2.
Wow, this in interesting - reading about how long the LPs seem to take. Before I had mine, I read up as well as I could, and from those readings, thought mine would likely take several weeks too. Imagine my surprise when it took mere days. They only took about 8ccs too. I'm not sure what lab my doctor uses, but he IS under the umbrella of a local med school, whose main facility is right next to our MS Center of Excellence, so maybe they are using state of the art labs? I did find an e-commerce site for a lab specializing in super speedy isoelectric focusing... I'll have to dig deeper.
In the meantime, thanks for the great links! I will have to take a look. :)
And what is up with Mayo Clinic? Are they just running on past reputation or are they still as good as their own press bills them? Everything I read on here - and my own experience and experiences of friends, makes me think that much better MS docs are to be had, or certainly AS good. Maybe I've just had a string of good luck (every time I type that in one of these posts I snort to myself - MS has luck with it, that's for sure, I'm not sure GOOD would be the right descriptor) with the speed of my diagnosis. The limbo horror stories on here make me almost feel guilty sometimes.
The Mayo does most of the MS LP tests for the country. Sometimes they get a back log. Sometimes they send samples to several labs to compare them. Mine took six weeks and were sent to several labs. The Mayo has more precise testing on o-bands( if you have o-bands in the CSF and not in your blood serum you may have MS) than other labs. The standard for how many o-bands you needed was raised by the Mayo. I think it used to be one.
The Mayo lab has no real complaints. It is harder to get a MS diagnosis at the Mayo so that is where "hold the Mayo" comes from. It is all individual. Some people have no trouble getting diagnosed at the Mayo. It is more famous than other hospitals so it probably gets more of a reputation good and bad. Its like any famous hospital.
I had the majority of my testing done at the Mayo and really have no complaints about the care I received there. It was nice to get testing and results back within 24-72 hours and the staff worked real hard at coordinating appointments so that I could be seen in the same day as the testing if possible. LP results were back within 24 hours.
Unfortunately, I'm no farther ahead in figuring out what is going on with me even though I have been seen at the Mayo...and I think I'm going to have a hard time getting another doctor to consider MS a serious possibility for me since THE MAYO said I do not have it. Which is great, but then what do I have??
What I was expecting from the Mayo, was if it wasn't MS...they would have all these other specialist they could converse with to try to determine the cause of my symptoms...instead, I was told to get back in touch if things got worse. Appreciated the care, disappointed in the outcome.
I hope your LP results help shed some light on what you are dealing with!
hey Artanis, is the " MS Center of Excellence" you mention the ones affiliated with VA? they did mine. >5bands came back some years ago. beats me if tey used that "assay" or "agarose" type test. even 20+ years inbtween LP's and the bands still showed every time. didn't take long for my results either. good luck
I'm not sure what VA is? But I don't think so, since I'm in Oklahoma. Our center is relatively new, although we've apparently had some pretty stellar MS docs here for quite a while. Go figure. Oklahoma is NOT one of the better states for health care in general. However, in this area we seem to do well. I know several friends of mine with MS who just rave about the facility, and say that not only are the doctors wonderful, the staff is top-notch too. If I get tired of my doc, I will tranfer over there, but for now my doc is doing OK, and I don't feel the need for the thrash of changing. It's nice to have a good option though.
Anyway, it is part of the OMRF, the Oklahoma Medical Research Foundation, and I know they have their own labs. Since my doc is with OU, whose facility is right across the street, I suspect they use the OMRF lab.
I am jealous. I live in the City of Medicine where Duke University is. We only have one MS doctor at Duke.
Wow Alex, I'm sorry to hear that. When I drag my head out of the self-pity and emotional stew I wallow in from time to time, I realize how fortunate I've been in a lot of ways. I work with a guy whose wife was a MS research study RN for one of the docs at OMRF when that doc was still working at OU, so she has been a great support and resource. Off the top of my head I know at least 3 docs who do or have specialized in MS, and my neuro is a very new doc who trained with the same doc my friend's wife worked with, and who is now at the OMRF. My doc lacks a bit of seasoning, but in retrospect, he pursued my case as probable MS from the git go, and was agressive in speedy and thorough testing. Of course to be fair, other than my age of 52 at diagnosis, I presented with a pretty textbook case of one-sided motor symptoms, characteristic lesions AND O-bands, so he'd had to have been pretty dense to miss it, but overall, I'm good with him right now.
I've read so many dx horror stories on here, it constantly makes me realize I how rare my experience was. And it's kind of weird, because Oklahoma City is not a very big place compared to many cities. I pretty sure the OMRF gets patients from several states though.
And oddly, we have an MDA center here too, where I took my mom when she had ALS.