O-bands, Mayo, confusion!!

[eham05]

Hello,
Currently I'm a diagnostic patient at Mayo (its been a long road of 7 years of junk). Anyways, i was diagnosed "MS, not otherwise specified" in Nov at Mayo, THEN tests were ordered. I do have trigeminal neuralgia, hemifacial spasms, and a failed brain stem auditory test in addition to ...
However, a host of symptoms. LP results are rolling in now, and aside from.high lymphocyte percentage in body fluids (what does that mean?!), my O-band result says "0" in the box of CSF and serum... However the lab note says that it's a negative test because even though there were three bands in the CSF, there weren't any in the plasma.

Upon research i found that CSF and plasma bands don't have to match to prove a positive O-band test, which all this terminology seems so repetitive. Anyways, I'm quite familiar with other lab reads but not so much with O-bands. What does this lab note mean?? Thanks.

[byyygrace]

I was diagnosed with no O-bands.

[eham05]

I'm actually on my fifth opinion, so no worries! =)

[eham05]

I was dx based on MRI, symptomatology, and clinical tests during exam. Based on my history if HSV 1 and EBV they're checking to make sure i don't have viral  issues. Here's the link to the four band explanation.
http://www.wardelab.com/edit_15_1.html

[sllowe]

Hi there,

No wonder you are confused. Dx'd 1st, then ruling out mimics? That's is not standard (but who am I to question Mayo, lol).  Thorough docs and MS specialists look at all the evidence, and all mimics, and make decisions based on what you have that is consistent with MS (and there is a lot needed to even be considered), and what you don't have in regards to mimics (among other things of course). Rule outs are just one piece to the puzzle.

Here is a health page on O-bands. It's solid info you can trust. However, maybe something has changed in regard to what constitutes a positive result, i.e., "unique banding" in the CSF that is not in the blood serum"  is a definite. It would be positive I thought if two or more unique bands, but maybe that has changed. It's something to ask your doctors.

I very much wish you well with the rest of your workup. I would hope you would get a 2nd opinion as well :) It's just that important.

Here is the link to our health page on banding:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36

Keep us posted and thank for joining us!
-Shell

[eham05]

Hello, thank you!

Basically there are three o-band panels- CSF, serum, and total (this is where they list the reference range as more than 4 IF positive). So all three of my boxes show "0", but lab notes show that because my CSF only showed 3 or less o-bands the tech marked it negative.

I will say that i read a few lab manuals last night and Mayo currently uses an IEF process to determine bands, which after 2003 was considered to be more specific than the traditional way of separating bands during lab analysis. This is why Mayo had increased to a required 4 bands. Their reasoning is too avoid misdiagnosis in the area when a patient presents transient symptoms or symptoms not separated by time and location.
Having said that, even without full bands my Neuro at Mayo has already diagnosed me and is now working backwards to rule out other conditions. I really feel like it depends on the doctor you get at Mayo, but too I'm a patient at the Jacksonville clinic and they process differently than Rochester. I will try to find the link again for the lab manual in regards to Mayo's rule in case anyone here wants to read it- it was late and I'm still sleepy, hehe.  

[kwarendorf]

Hi eham - Welcome to our little group. We're not doctors, but some of us do read an awful lot about this stuff :-)

I'm not sure what, if any, is the difference between plasma and serum. My quick search found that it has something to do with clotting. Hopefully someone more knowledgeable will come along.

In basic terms when they do an LP one of the things they look for is o-bands, in both the CSF and the blood sample (serum) collected at the same time. If there are o-bands in the CSF but not in the serum, this points to MS. If there are o-bands, in the same number, in both the CSF and serum, this points away from MS.

The results you posted seem to be contradictory. In the forst section you say that there were no o-bands (0) found in either the CSF or the plasma. This would seem to point away from MS. In the Note it says there were 3 o-bands found in the CSF and none in the plasma. This would seem to point towards MS.

Lymphocytes are white blood cells that fight infection and or inflammation. It seems to me that your symptoms would confirm that there is some kind of inflammation present.

Like I said, welcome and I hoe someone smartercomes along :-)

Kyle

[Lulu54]

For the LP findings to sugest MS, there should be a difference in O-bands between the CSF and the blood serum.  There should be more in the CSF, such as what you say your lab report reads.  It sounds like you have 3 o-bands in the CSF and 0 o-bands in your serum.


The Mayo criteria looks for 4 or more, which is part of our Mayo discussions here.  Their criteria is stringent and outside of what the McDonald criteria reads.  And McDonald does not require any o-bands, at all to make the diagnosis of MS.

Mayo uses a different criteria for diagnosing using the results of the LP as supporting evidence than almost all other MS clinics in this country.  It is confusing to us and has led us to the saying 'hold the Mayo' when people ask about going there for testing.

Have you considered taking your medical records and getting a second opinion at another clinic?  

good luck - it's a difficult journey especially when you are being held to higher standards than the rest of us.
Laura