[snoodles]

Hi, I made this post at the other place also - burried down in a thread but it moves so slow over there....

I was just reading a thread about the o bands and that once they are there, they are always there. That is very interesting - and I had never heard of that before....

My Neuro was pleading with me last summer to have another LP., my first LP was back in 1999. She has been on me for over a year to have a repeat LP, but last summer I was in very bad shape and had to buy a cane. She really wants to get me dx'd because she believes in aggressive treatment. She needs one more piece of evidence, however, before she is comfortable making the final dx and feels the LP is important...

Mary (and several others) advised me that they felt I should have another LP and apparently many people have had their dx finally confirmed by an LP.

Now - finally - to my point --- my Neuro has indicated that there is a higher probability of seeing the evidence in an LP during times of a flare. Thus - I just told them a couple of weeks ago that I have finally decided to have another one but I am waiting until summer because I am always so very sick during the hot months. They agreed that is a good plan.

My question now - if, perhaps - from last summer when I was so sick, I developed the o bands then they should still be there right now - thus confirming a dx at any time. Is that correct ???
If so - I wonder why my Neuro (she is an MS specialist and has an EXCELLENT reputation) I wonder why she has explained to me that I have a better chance of showing evidence on the LP during or very shortly after a Flare ????

Just curious what your thoughts are or what I am missing.....
Also - not just Mary - but anybody who has knowledge on this subject - please comment...

Thanks so much !!
Snoodles...

[Gazelle]

Snoodles,

I just want to say that I hadn't heard about O bands being there perpetually until the neuro at Hopkins told me that. So if I go with what he said as gospel, then yes, they should still be there.

And if you believe Wikipedia (which I always take with a grain of salt):
"Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands."

Also, the University of Birmingham (UK) says:
"Once an oligoclonal response is established, it can be maintained for the natural life of the patient (except in cases of some CNS infections)."
http://www.ii.bham.ac.uk/clinicalimm...nology/IEF.htm


Now either my neuro at Hopkins is in collusion with Wikipedia and the University of Birmingham or there is a medical basis for what he says.

Quoted from Snoodles post:
my Neuro has indicated that there is a higher probability of seeing the evidence in an LP during times of a flare. Thus - I just told them a couple of weeks ago that I have finally decided to have another one but I am waiting until summer because I am always so very sick during the hot months. They agreed that is a good plan.


You can schedule your flares? You're GOOD!

Seriously, if she thinks that your LP will confirm during a flare then go for it.

[lady_express_44]

I had remembered reading that they could increase during a flare, but when I researched again recently (for someone on another forum), this is what I found:

"Oligoclonal bands (OCB) are not unique to MS. In general, CSF OCBs are found in over 90% of MS patients, 30% of patients with central nervous system inflammatory and infectious disease, and 5-10% of other, noninflammatory neurological disorders.

In MS, once OGBs appear, they may increase in number but do not disappear. OGBs do not correlate with severity, duration, or disease activity in MS.

Myelin basic protein is different than OGBs. MBP usually rises during an acute exacerbation and then levels tapers off. Both parameters are tested in CSF in cases of suspected MS. They are used in addition to other information such as history, physical exam, MRI, EPs to establish a diagonosis of MS."

http://www.medhelp.org/forums/neuro/archive/7566.html

"Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands."

"The presence of one band (a monoclonal band) is not considered serious and may simply be normal. More bands may reflect the presence of a disease. The bands tend to disappear from the spinal fluid as a person recovers from the neurological disease."

http://en.wikipedia.org/wiki/Oligoclonal_bands

So I guess they reduce after the inflammatory process with "other" conditions/diseases, but not in MS.

Cherie

[Gazelle]

Except, of course, for the 10% who have MS who don't have permanent O bands. (If you believe the University of Birmingham statistics.)

[snoodles]

ROFL - well - no I can't actually schedule my flares but I am almost certain to experience flares in the summer months - at least that has been the case for the last 3 years.

Although - having said that - I'm not certain if it is actually a flare - or pseudo - exasperation due to the heat... but in any case - I was led to believe (at least that was my interpretation) that due to the fact that I am so much worse during those times - it would be ideal to have the LP during one of those times. In fact, I was told that when it "hits" me - to give them a call and they will get me on the schedule for the LP.

From what I am learning though - it seems that is really not important to have it done at that particular time.

I'm so confused as to why they told me this....

[lady_express_44]

Maybe she was looking for MBP, with O-bands, because they do apparently spike with a flare.

I just wonder what idiots volunteered for this study on whether they do or don't spike during a flare (vs. not) anyway.

Cherie

[snoodles]

Thanks so much for all the information !!!!!
This is contrary to what I had understood from my Neuro.

I'm still not ready to run right out and get on the LP schedule - but I am glad to see that once the bands appear with "MS" they stay.

I do know of several people here or the other place who have been dx with MS and do not have bands.

I'm just feeling really bad off and on but more and more struggling in the past year with work and I know that it is past time for me to get a dx if it is to be. If not, I probably need to go with the Fibro dx that I have (been dx by 2 different Rheumatologist with Fibro) but to be honest - I absolutely DETEST that diagnosis. My Neuro does not even believe in Fibro (I do absolutely believe it is a very real syndrome).... But anyway - since I have lesions in all the right MS places - I tend to think I more likely do indeed have MS than Fibro.

Thanks again - for all the info !!!!
Snoodles

[snoodles]

Good point Lady - that may be what she is looking to find !!!

I can't imagine volunteering for that study !!!

[lady_express_44]

Here's an interesting link:

http://www.ingentaconnect.com/conten...00007/art00038

Cherie

[tante]

Snoodles, I was just over at the other site hoping for a response to your question, was going to suggest you do a separate post .... you did, here

Thanks to you for pursuing it, and to everyone else for info and links.