Quix - great explanation, this is really helpful. I really didnt know any of this.
When I had my LP at the height of my worst flare, after a MRI which showed multiple MS lesions on my brainstem and c-spine, the LP came back neg for O bands. Though the neuro said it was abnormal and still pointed to MS. I think it had to do with some kind of proteins being elevated? Does that make any sense to you?
At that point I was diagnosed anyway, due to the abnormal MRI and at least two flares - meeting the dissemination in time and space criteria. So I wondered later why they bothered with the LP since they diagnosed me immediately afterwards, despite the neg O bands?
Any thoughts on this?
There are two things that can make the LP "positive" for MS, meaning it points toward the diagnosis.
The first and most highly regarded is the presence of two or more O-Bands that are unique to the CSF.
The second is an elevation of the IgG Index. This is a derived number that shows that the rate of antibody synthesis in the CSF is higher than it is out in the body.
Some neuros discount the IgG Index completely, but, the experts still state that it is a positive finding. That is what was abnormal on my LP, too.
When you lood at all the data, being negative for O-Bands does NOT (read that NOT!!!!) negate a diagnosis of MS. A good 10% of MSers do not have O-Bands. 40% of people with PPMS do have them. And two thirds of the labs performing the testing for O-Bands do not do it correctly, Many do not use IsoElectric Focusing and will fail to identify bands which are present. The neuro that sees O-Bands as a Make or Break for the diagnosis is a Dodo!
Wow! Thanks - this is a better explanation of this than I've seen anywhere else.
I was just reading your comment on addicted2harley's post... Yes, I agree. My LP was torture - putting somebody through it multiple times because they neglected to get a blood draw is just irresponsible.
I wish neuros were better educated about diagnosing MS.
Thanks, Q, for that great explanation. We should capture this write-up and turn it into a new health page.
Thanks for the follow up. it's coming back to me now about the IgG. I always feel reassured when my neuro is on the same page as you! :)
Thanks, Jen and DeeVee, those are really sweet comments and they make me feel good.
Hi, I just posted an hour ago on the site trying to get an answer similar to what you had added about O bands. I actually have autonomic neuropathy and have been battling valley fever for a few years. Just had a spinal tap to rule out menningitis. I have awful headaches and lots of pain, haven't been able to work for 4 years or more. Anyhow my question is, on the MS panel for spinal tap the only thing that showed up was a significant amount of red blood, which I assume is from the painful tap that they had to restart three times. All tests were negative, except for an IgG synthesis rate that showed up at -5.5. Does this mean anything? Not looking for diagnosis, but can't see Doc till March 25 and this this question is really bothering me. Also waiting for valley menningitis test that takes over a month to get back. Hope you can give me a clue in the mean time.
Actually, the value of the elevated antibody (IgG) synthesis rate in the CSF cannot be known without knowing what the IgG Synthesis rate is in the body. So we don't know a lot just from that number.
If you have a form of meningitis then the rate of IgG synthesis will certainly be higher.
A large amount of blood means they nicked a blood vessel on the way into the spinal canal. Often this is unavoidable. I have done hundreds of taps and sometimes they are hard. Sorry yours was so painful.
I guess my answer is that, without a serum IgG synthesis value to use I don't know how to evaluate your value. If MS is even on the radar, you could ask your doc if a blood sample done now would be of any value to get an idea of what the IgG Index is.
Oh thank you for your quick response. I know they did the blood test along with the CSF. Not sure if that's what you mean. I did have a normal IgA, serum @ 87. And a normal IgG Index @ .40. Not sure if this what you meant. That is a bummer if it is mennigitis as the treatment for cocci is awful! I suppose either way is awful. Cannot believe you've had so many of these CSF's. My gosh that is awful!! So sorry.
Thanks for the explanation.
I'm not sure if you could answer this or not...I'm pretty sure this has came up on the forum before. I had an awful experience with the LP and wouldn't want to have another one unless, maybe it would shed some light on what's going on with me.
My symptoms have progressed and it does seem some of my test our changing (I now have a positive SSEP that was negative back in 2007). Also back in 2007 they did a LP. My new neuro has thrown around the idea of repeating the LP, but isn't exactly sure if it would show anything since the old one was negative.
Have you every heard of anyone on the forum that first had a negative LP...going to a positive LP with O bands or showing elevated IgG because of their symptoms progressing? I'm a little confused as far as this part..I've heard several doctors say once it's negative for O bands it's always negative..but then I've heard from other doctors this isn't the case. Even if you factor in the new procedure for finding O bands (which I'm not sure if I had) could it show a different outcome depending on how early your in to the disease process?
Hi, always good to see you. The general consensus is that one tends to accumulate O-Bands as time goes on. So it is not unusual to see someone go from negative or just a few O-Bands to an increase in the number later. It is believed that once you have an O-Band, you'll have it forever.
The doctors that say once negative always negative are on some kind of hallucinogen. We have members here on the forum that prove them wrong.
The "new" procedure for testing was put into place around 2004. But, still, a study from last year showed that a significant number of labs still don't use it. If it is not used, they will find far fewer O-Bands.
So, yes, the results can change as the disease progresses.
Tkimber - Oh no! lol I haven't "had" hundreds of LPs - I have "performed" handreds of them. Whooo, big difference.
It's the "IgG Index" I was looking for.
I have read that if you have LP done in the early stages of MS it is more likely to be negative. I think that rings true with what you have stated above. But would the IgG index be unchanged too?
I had an LP done just about 10 weeks after my very first symptom of my fingers going numb in my right hand. I'm beginning to feel the traumatic experiance was invane. ( it took 4 attemps and only succeeded when a more senior dr took over. I had a bruise that looked like I had been kicked by a horse. and the pain to go with it).
Thank you for breaking it all down.
It has bothered me for some time now about what it all meant - now it's so much simpler.
I can turn this into an HP!
I love the way Quix takes a topic or subject that seems so foreign to most of us here and she writes it out for us and we all go OOOHHHH NOW I GET IT!! :)
Quix, thank you. You really do explain things very very well for us.
Excellent thoughts! I have an IGG Index of .60. The results from the LP are as follows: The CSF contains 4 well defined gamma bands that are also present in the corresponding serum, but some bands in the CSF are more prominent. This pattern is associated with Guillain-Barre's syndrome, peripheral neuropathy or increased permeability of the blood-brain barrier secondary to infection or trauma.
Now, I have seen 3 neuro docs. All said I was fine. I am off balance, can't see most of the time with blurred vision and I can barely move my arms in the morning. I am hot/cold. I am so fatigued I can barely work.
Thanks so much!
Hi Carrie - This thread is almost two years old. Many of the posters may no longer be around. Quix has not been in a quite some time.
I think you'd get a better response if you "Post a Question". It will give you a chance to introduce yourself and ask us lots of questions :-)
Welcome Carrie. Like Kyle mentions, new question would be great. But,
so glad you found this older discussion.
While we have an O-band health page. I'm going to add this discussion via link to it for good background info.