Hi everybody! My family and I have been doing some research on oligoclonal bands lately, and it seems from what we can tell that it's normal for a small percentage of normal, healthy people to be "OCB-positive" - somewhere between 0-4%? That's the best we can figure from checking out studies online, anyway. What I'd like to know, though, is how many bands can a healthy, normal person have? Just one? Or is lots okay too?
I've been pretty sick for the last two or three years, and one thing the doctors were looking for was MS. In the last two and half years, though, I've had three clean MRIs (and one of the C-spine that was clean too), and I recently saw an MS specialist who told that these MRIs pretty much guarantee that MS isn't the problem. Because my symptoms are so spread out over my body, he said, it wouldn't be possible for the responsible lesions to hide.
I also had an abnormal VEP (normal wave forms, P100 latencies of 109 and 112) and an abnormal spinal tap (mildly elevated white cells, 10 oligoclonal bands, everything else fine). The specialist I saw told me not to worry about these, that they were almost certainly false positives - and, well, I'm a little leary about taking him at his word.
Given that the MRIs have been clear for several years, it seems to me like MS isn't all that likely. But the other tests bother me, especially the 10 oligoclonal bands. Ten just seems like a big number. So - well, I'd love to hear any input at all, but mostly I'm wondering, does the number of oligoclonal bands actually matter? Thanks!
Thank you so much for joining us. 10 bands in your spinal fluid certainly sounds positive for O-bands, but, do you know what they found in your blood serum? These bands need to be compared, side-by-side if they found them in your blood too.
Have you asked your Neuro what has been ruled out so far? Given the lengthy list of mimics his/her response to this question is critical.
I wish I knew the answer to the amount of bands and the meaning.. But I don't of hand so hoping some others will join in.
With 10 o-bands you have something going on. After they found 12 o-bands they checked me for Lupus some other diseases which sound scary but are routine for anyone with so many o-bands. 10 o-bands are not false positive the question is what inflammatory process caused them. Have you had blood work to check for other things? To me that would be a reasonable next step if it has not been done yet.
Thanks everyone for the responses, and thanks sllowe, for the link! The results said I had 10 extra bands in my spinal fluid (I don't know if I had bands in my blood as well, or if that matters - I get so confused). HVAC, that's interesting to know about lupus - I didn't know! I think, for me, they've done about every lupus blood test there is and I've been absolutely fine on all of them, so that's good. I really appreciate your guys' input - this is all so confusing! Thanks -
It is common to have O-Bands in the Blood (Serum). And sometimes the O-bands that are in the blood also appear in the CSF. Thus, they are seen in both places. These O-Bands that appear in BOTH the blood and the CSF do not count, as they were likely made in the blood and seeped over into the CSF.
What is critical in determining O-Bands in the LP is finding ones that appear in the CSF, BUT NOT in the blood. These are colonies of antibodies that are being produced in the CSF and indicate an immune inflammatory response. These are the ones that are counted for purposes of MS.
That is why a blood sample must be taken the same day as the LP is done. To look for all the band that might appear in both places. Then the ones - if any - that appear in the CSF are compared the ones found in the blood. A positive result is ONLY the O-Bands that are UNIQUE to the CSF.
I really want you to follow the link in the Health Page to see a picture of what this test looks like. You will see that the tech actually looks at a banding pattern. Each band has a numbered position. The look at the banding pattern in the CSF and then they look at the banding pattern for the blood. Any Band that is seen in the CSF ONLY, and not in the blood is a positive O-Band.
If a healthy, normal person has O-Bands, they only have one. that is why a positive result is two unique O-Bands or more.
You are correct. A small number of people have a stray O-Band, likely from a prior infection that caused a mild meningitis or encephalitis. Many viruses do this. The person only feels rotten and has a headache and gets over it, but there was a small amount of inflammation going on in the brain. For, example, it is not uncommon for EBV to cause a mild encephalitis.
10 O-Bands is a large number. It is crazy for any good neurologist to just "presume" that this is a lab error or a positive result that doesn't mean anything (false-positive). To ALSO conclude that a VEP is a falsely positive seems monumental stupid. this doctor is dismissing a test because it doesn't conform to his preconcieved idea. this shows a lack of intellectual intergrity. The good doctor will rethink his theories when he meets up with two pieces of seemingly conflicting information. And, if a doctor doubts a test, then they should repeat it, using a different lab or tech. I realize what this means with regard to the LP, but just to dismiss it??
A Clear MRI done on a very powerful machine with updated software still will miss a small percentage of people with definite MS. There are other kinds of lesions than just the bright T2 hyperintensities, that can show up in MS such as black holes, brain or spinal cord atrophy, and gray matter lesions.
Your VEP does not rise to the generally accepted level of abnormal. Within the normal population some will have slightly high latencies. The accepted level for abnormal that I have repeatedly found is 115msec. People with active optic neuritis often have latencies between 130 and 200msec.
The reality is that most doctors will not diagnose, or even consider, MS if the MRI is negative. The reality is that MS follows few rules and we have people here who had negative MRIs for years before their lesions "showed up" on MRI. Just because they are invisible to that MRI machine does not mean there is not damage causing significant symptoms.
In my case I was diagnosed with a two years of "normal" brain MRIs that just had a UBO. (Unidentified Bright Object) My C-spine and T-spine was negative for two years. But, the MS specialist I saw knew I had MS. He, too, needed at least one lesion and to his reading the UBO was an MS plaque. He repeated my C-spine within a month on a better MRI machine and found 6 lesions. So my "normal" C-spine" actually had missed showing 6 lesions. Was it really normal? Our MRIs are just imperfect tools. The doctor does better to read and treat the "person" not the image.
You need a new neuro, one who will not disregard outright an astonishingly positive LP, just to stay consistent with what he "believes".
2 O-Bands are considered positive by the majority of the MS world. The Mayo Clinic has started requiring 4 or more to call it positive for reasons I have never seen explained or justified. Several members of our flrum have 8 or more here. 10 is lots.
I do have a question. How many white cells were in your CSF? If there were 20 or more it points to a CNS infection, 10-20 is equivocal, and less than 10 should be normal. Varies with the lab.
Lastly, when a good quality MRI is negative, but the patient looks like MS, the search for another answer, a mimic, should be undertaken again, especially looking at those diseases that produce multiple O-Bands.
Does the # of O-Bands actually matter? No, they are accumulated throughout the course of MS and once you have one, you will generally always have it. I have an MS diagnosis with 1 O-Band (negative for MS) and a markedly elevated IgG Index (positive for MS, though less specific). I still only have one 3mm lesion in my brain MRI since the beginning.
Why don't you tell us your whole story, with how and when all the symptoms came, stayed, got better or not? We would have a better idea of how to explain things.
Thanks so much for the response, Quix! My mom's been reading your posts for a while and she was so excited to hear that you'd written :) Thank you, too, for the advice about the neurologist. My gut feeling's been telling me a new doctor would be a good idea, but I feel a whole lot more reassured to hear somebody else say it.
As far as my story goes - things started to get hinky for me about 5 1/2 years ago, when I was 17. I was really sick to my stomach all through my senior year, and after a few months the doctors diagnosed gastroparesis - chronic stomach paralysis that happens either because of stomach muscle or nerve malfunction. I remember being dizzy sometimes then, although that could have been for any number of reasons - like not eating, stress, the stomach meds... also, I'm just really clumsy :P So I'm not sure if I should call this a starting point or not. Anyway!
About 2 1/2 years later (I was 19) I started sleeping too much. About a month later I got assaulted, and for the next few months I was a total emotional wreck, whoo boy! I wasn't eating, wasn't sleeping, and then sometimes I was sleeping A LOT - like 24 hours in a go. I was super dizzy and clumsy; I did things like pull myself up on a rock wall to sit and instead I'd end up pushing myself all the way over to the other side, so I'd get cut up and sprain things. During this time my mom told me about an article that linked two cases of gastroparesis to MS and I started FREAKING out... although, looking back, I don't think it was warranted; I'm pretty sure all of my symptoms can be explained by stress. I mean, for weeks on end I was in a constant adrenaline rush. The situation with the guy was pretty hairy. But, anyway, my PCP is really great and he had me do a brain MRI just to ease my worries - that was 2 1/2 years ago now. After that, I wasn't even thinking about MS.
I was still sleeping a lot, though, and then about six months later my big toe went numb. The rest of my feet went numb next, and then my hands, and my face. It felt like a plain-old novacaine shot, and while it lasted it was pretty bothersome (stumbling, dropping plates, biting my lips). The numbness left my feet first, then my hands, and after about five weeks all the numbness was gone. About a month later, I had an MRI of my brain and C-spine (2 years ago - clear again).
Since then, I don't think I've had any big "episodes" - just big-time sleepiness, some numbness on the bottom of my foot, a super-cold patch on my calf, some hot patches on my legs and face, and this one freaky period where I'd reach for things and be just a quarter of an inch off. Oh, and there were some times when I couldn't walk very far without taking breaks, it was a while ago, but best as I can remember, I think I just felt weak.
Anyway, I had another clean brain MRI this past December, and a spinal tap in January. To clarify, it said: 9 white cells (instead of 5 or fewer), 91% leukocytes (instead of 60-80%?), and 10 oligoclonal bands unique to the CSF (everything else was good). As far as I could tell, my PCP and usual neurologist seemed to think this was pretty bad and I might have MS, so they sent me to an MS specialist, and he was the one who said there was no way it's MS and I shouldn't worry about the tests. Whew! Okay, I didn't mean to write so much - sorry about that! Anyway, that's my story. If anybody has any ideas or suggestions, I'd be grateful to hear! You all have been so helpful, and it's great to hear from people who have been/are going through the whole diagnosis bit for MS. Thanks again, Quix! :) I really appreciate you being so thorough.
i too say welcome. so glad Dr Quix cleared that up for you and a few more of us.
i had a neuro years ago write the "false-positve" statement regarding o-bands and it has cause more problems for me than i care to elaborate on.
this is about you, so welcome and i hope you get the correct answers you deserve and get on the good side of getting well. as you can see, some super good people here in the know that will not lead you astray. and with this disease, that is a God-send!
Hi! Thank you for the welcome! I just realized I never answered your first question, from your earlier post. Sorry! The neurologist I saw said my oligoclonal band results were a "false-positive" in the sense that I didn't have MS, and that I didn't have anything wrong with my nervous system - I guess he did mean that perfectly healthy people can have results like that. Maybe that's true? But I don't know, the more I hear about it on this forum, and the more research I do, the less sense that makes. This neurologist gave me a bad feeling. He kept citing studies from the 1970s and earlier. I'm going to try for a second opinion.
I'd love to hear your story! I imagine I can find it somewhere on these forums? Well, thank you again - I'm going crazy over all of this, and I really appreciated the feedback!
i won't go off on this issue. most here know about it and i now in some type of anger management over it and the disease itself. though sometimes the sessions make me more angry. that is another chapter. ;-)
Quix can steer you in good intellectual direction regarding this and the often stupidity of the neuro profession.
well, some of my story is in my journal section on this forum and a search on my early posts can fill in the gaps.
crazy? many here know how that merry-go-round with the doctors can make us feel/think/believe ...
Hi!!! I had a spinal tap and had 8 bands. I went to Mayo Clinic and they diagnosed me with a CIS of MS. I was frustrated with my current nerologist so thought I would try a different one and he said the same thing as what ur neurologist is saying that many healthy people have the bands. He said I had a stroke. Well needless to say I am back with my old neurologist and believing what she and Mayo clinic say.
I would def get another opinion. It doesn't hurt :)
for my historical writings on this forum i will add this:
the VA has tried that with me too:
"you had a mini-stroke some time in your life" <- not verbatim but close
the VA tried to tell me my past drininkg caused the positive MRIs: "we are not certain what the images are but your drinking may have caused them" <- not verbatim but close
a vet org officer said the same thing when i asked for their help:
"everyone has o-bands...nothing is wrong with you..." <- not verbatim but close
the VA after 24 years of documented symptoms, positive MRIs (dawsons thingies), 4 pos LP's, csf infection 1896:
"patient could have had a CIS of MS" or "ADEM", "his tests and images are suggestive though of something going on" <-not verbatim but close
i apololise for repeating these things so many times on this forum, but i'm trying to keep a bit of a record on this forum for myself and two, such statements may help others here realize that a doctor could be very wrong, or as Quix correctly states, "out to lunch".
patients nned to know these things so they can be prepared to lessen the amount of time their doctors keep them on these unnecessary merry-go-rounds adding insult to illness(s)
Thanks so much! Ufrustrated2 and togomalik, thanks for sharing your experiences with me - I know you're telling me about things that are awful and frustrating to go through, but it makes me feel better anyway to hear about it. Ugh, this is driving me crazy, and of course I *know* I'm not the only one going through this kind of thing, but still, it makes me feel so much better to hear other people's specific stories. And thank you, Quix, for making me laugh about doctors - on this page and others - oh, goodness, I needed that!
Ufrustrated2, what you said about "historical writings" makes a lot of sense and I wanted to add what I've learned too. So, after hours and hours sunk into scientific papers...
* Some studies report a small percentage (4-7%) of healthy controls who are positive for oligoclonal bands. BUT, none of these studies (as far as I've seen) specify how many oligoclonal bands were present in the healthy controls.
* Using the older agarose method, up to 2 bands are sometimes seen in healthy people; using IEF, healthy people have 1 or, in some studies, none.
* When people with MS have bands, they tend to have lots of bands (although not always); when people with other neurological disorders have bands, they tend to have fewer (although again, not always).
* I've seen one textbook claim that IEF produces more false-positives; however, I haven't seen any studies to back this up (just the opposite, I think).
Okay, I wish I'd kept better notes during my research... sorry! Ha, this was a pretty obsessive, frenetic little research project of mine :P My conclusion: just like Quix said, anything more than 1 oligoclonal band points to something being pretty wrong with the nervous system. Ugh - but why would that neurologist say differently? I mean, he's an MS specialist! Wouldn't he know? I feel like I'm missing something. Ugh - just - frustrating!
Thank you! Thats what I thought. I asked him if that were the case then why do they even check the o-bands?? He didn't have an answer for that. I thought it would be best to go back to my original neurologist and work it out.. I just told her my complaints and now we are okay.
Quix is not an 'online diagnostician.' She has never diagnosed anything here, and has been careful to say that on hundreds of occasions. She is, however, a medical doctor (pediatrics) who had to give up her practice because of MS. Since then she has spent countless hours researching MS and helping members of this forum.
If you have any evidence that what she's written about O-bands is incorrect, please give it, instead of making a snide innuendo.
I'm writing a book on Cerebral Spinal Fluid condition being a major factor for undetermined illnesses such as MS, Parkinsons, and Insomnia.
All of these have similar thermal deregulation underlying pathology. Thermal deregulation has to do with core temperature of both your gut and your spinal fluid.
I found by treating my cerebral spinal fluid first, the symptoms that went away left me with more treatable recognizable issues.
You've heard of the cerebral spinal fluid diet haven't you? No? That's because there isn't one. If I had to pick I'd combine 3 diets and increase Ultra Violet B exposure while artificially increasing human melanocyte (a-MSH).
The diets I would combine are - Yeast Free Sugar Free (see how to rid your body of Candida) - the Second is Joel Fuhrman's Eat to Live - and the 3rd is a 40 food diet for Allergy.
The problem with bacteria in the gut is that once it gets out of control it can be very hard to fix. New technologies along the line of fecal transplants are helping somewhat.
Pathogenic Yeast on the skin is treatable by UVB exposure (Matrix High Pressure Quartz Light Beds) but only if you are able to produce Melanin.
If you had your foreskin removed (males) as a child you are 'melanin challenged'. I had to use a drug called afelmelanotide to increase my Melanin.
Of course I smile when I read that the user lives in Washington. I to live in Washington. Oregon and Washington SUCK for UVB availability plus we are in the mold capitol of the USA.
Anyway good luck getting it all sorted out. Treat the host for bacteria and fungus and see what remains.
Hello am newly diagnosed after 4 1/2 years from my 1st mri. (that one shows 3 lesions, one enhanced.) Now i have 7 some they 'wouldn't count' none enhanced and yet I keep hearing there are no changes ( i have been to different neuros). I recently redid my spinal. The spinal showed 8 O-bands none in serum and no presence of infection. blood and vep's normal. I have double vision and nystagmus due to the lesion placement on cerebellum. balanceissues with that as well. Most recently my left leg is weak, weird burning sensation that only lasts a moment in different places and pain pain pain - aching, back ache, etcetc (differing kinds). I don't think my spinal showed any O-bands 4 years ago. My husband believes they 'botched' the test. could a person get 8 new bands in that span of time do you think?
I've done alot of research in that period of time to get myself and answer. While I feel validated in a sense (mostly in my own mind that i'm not totally crazy) , at the same time i'm rocked by my firm diagnosis now. They are suggesting interferons and i'm having alot of difficulty deciding whats right for me.
Thank you for any input
Celery47, I am in almost the exact situation as you. I have 8 Obands that are not in my blood stream. I've had congntive problems for the last 1 1/2, blurred vision, and weakness. The doctor's first thought was MS but my MRIs have always been clear. So no diagnosis. On top of that, I have antibodies for myasthenia gravis but my symptoms are not typical so they haven't made a diagnosis there. I was diagnosed with RA, but now doctors are telling me that is questionable. I've heard the false positive thing to, but repeated test show the same thing. If you find help, I'd love to hear about it.
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