oligoconal bands - how many do you have?

[ceeweed]

I have been doing alot of research about O-Bands - having more than ten myself with a dx of MS, only since December 2012, and having very mild sensory symptoms and only one attack ...

General research says that LP test results will prove to tell the full story about each person's MS dx ... ie, how severe symptoms will be and how the disease will progress.

So if you would like, please share your story of O-Bands ... how many do you have, how long have you had the dx, and how severe are your symptoms?
THanks

[ceeweed]

That's terrible Kelli! Did they not say anything about transverse myelitis - this causes lesions in the spine ... and paralysis usually comes on very quickly. And fairly often, you regain use over time. Residual damage however, causes many symptoms to remain.

This is often the first presentation to MS and over 50% of people go on to develop MS from Transverse Myelitis (TM).

I would defenitely request an MS neurologist.

[keldal]

Hi All!  I am so glad I logged on this morning and checked this string out!  I woke up paralyzed three weeks ago.  I've had right sided weakness due to herniated in my c & l spine.  I went right to neuro who ordered new MRI's of brain and entire spine and LP.  I have two tiny area of inflammation they aren't sure of the cause.  The LP was clear with no o rings.  I am seeing the neuro for follow up results.  (I got my results last night from the lab).  

The paralysis is much better, and I'm almost about 90% back to where I was, although I still have right sided weakness.  I have a lot of MS symptoms, but I suspect the neurosurgeon will dismiss it.  Maybe I need to find a neurologist who specializes in MS. After reading all of your posts, I'm not so sure MS could be ruled out in my case.  Especially due to ongoing symptoms.  I'm just thankful I can finally care for myself again.  I was fully dependent on my hubby for everything!  :(

Thanks!
Kell

[doublevision1]

Interesting paper I came across tonight, related to this topic, while researching my new neuro whom I will start seeing after I move.  He is the author.


Koch, M. et al.
Cerebrospinal fluid oligoclonal bands and progression of disability in multiple sclerosis.

Antibody-mediated inflammation is believed to contribute to tissue injury in multiple sclerosis (MS). The majority of patients with MS have oligoclonal bands (OCB), corresponding to antibodies against a variety of antigens, in their cerebrospinal fluid (CSF). The relation of CSF OCB and disease progression in MS is uncertain.

To investigate whether there is a relation between CSF OCB and a more aggressive disease course of MS, 143 patients with definite MS according to the Poser diagnostic criteria and CSF analysis at time of diagnosis were followed over a period of 5 years.

There were no differences in presence or number of CSF OCB between patients with significant worsening of disability and stable patients.

There were no differences in presence or number of CSF OCB between patients with stable relapsing-remitting MS and patients developing secondary progression during follow-up.

The presence or number of CSF OCB does not seem to influence early disease progression in MS.[1]

References
Cerebrospinal fluid oligoclonal bands and progression of disability in multiple sclerosis. Koch, M., Heersema, D., Mostert, J., Teelken, A., De Keyser, J. Eur. J. Neurol. (2007) [Pubmed]
 

[jen673]

Thanks for your reply :). I will definitely put this test to rest! Lol

Have a great day,
Jeny

[ceeweed]

Thanks cjldb!!!! THat was indeed exactly my case! Apparently all i had was atypical Transverse Myelitis that was highly unlikely to turn into MS ... until i insisted on an LP and >10 bands later, my neuro started to talk to me.

so i too am very thankful for a bit of backpain to have someone take me seriously.

[cjldb]

As bad as it was, I am glad that I had the LP. My symptoms were sensory and I actually think my neuro thought I had read things on the internet and "scared" myself. He was very dismissive of my symptoms and 3 lesions. Even saying "lots of people get dizzy, have weird sensations, and have lesions that do not have MS", which, in his defense, I know is true. However my LP showd >5 (no specific number was given) O Bands. So that combined with the other evidence got my diagnosis just weeks after my symptoms began and I immediately started a DMD

[ceeweed]

that's what i am thinking colin ... since so many presented with zero O Bands I will have to look into this a little more. Thanks again everyone.

[byyygrace]

Isn't there still someting in the spinal fluid that points to MS? I don't really understand how it all works but my neuro told me that "pieces of your brain are floating in your spinal fluid". Does that have to do with the elevated proteins?

Thanks,
Colin

[Sidesteps]

DX 2/2012 - SX started 5/2010

and, NO o-bands.

Significant sensory and other symptoms due to where the lesions hit.

Large MRI reflected mild lesion load that happened to hit prime areas for MS. (Optic Nerve, Corpus Callosum, Gyrus and positive spinal symptoms)

[LilMinnie]

My LP itself wasn't bad. The weird thing is, I had to have additional blood work done, so I had to walk to a separate lab right after I had it done.

My dad, who took me, thought I should have had a wheelchair since I had just had the procedure done. I was still numb, so I shrugged it off. Yeah, being Ms. Tough Gal ;-)

I was sore back there for two weeks! I am thankful I didn't get the dreaded headache, so I count that as a blessing.

I really didn't want to do it. Had both of my children naturally because I didn't want any needles in my spine. Still working on getting all my results. I don't know how much good it did to have it done.

So, that's my experience :)

[doublevision1]

Zero O-bands. Dx 2007.  Onset 2006.  Five attacks 2006-2011. None since 2011.  MS disease status: overall, not mild and not severe, so moderate I guess.  Frequent bouts of fatigue, chronic moderate to severe neuropathy in limbs, bouts of dizziness and poor balance, mild occasional swallowing trouble and hoarse voice, Lhermitte's, mild residual double vision and nystagmus.  No mobility problems, no bladder/bowel trouble.  All symptoms exacerbated with rise in body temp.

[essdipity]

No, this is not something you should have done. Lumbar punctures are invasive procedures that sometimes cause major after-effects such as horrible headaches that can last for days.

An LP positive for o-bands is not needed to diagnose MS, as your own experience shows, and quite a few people (see above) do have MS without indicators from LP.  Sometimes a positive LP can help nail the diagnosis if it is in doubt, but otherwise I would avoid this like the plague.

My own LP was easily done and without incident, both at the time and afterwards, yet not everyone is so lucky. Many doctors are skipping this step altogether.

ess

[jen673]

I was diagnosed based on history and my MRI findings with lesions on c-spine and in brain.  He felt no need to further test me and I have never ad a LP done.  So I have no idea if I have o bands.  Is this something I should have done?    

Thanks for sharing your research.  

Jeny

[HVAC]

I have had MS 47 years and mine is still so slow in progression my MS Specialist is amazed. I ride horses, walk, do yoga. I carried another MSer's walker up steep stairs yesterday and help her as she went up the stairs.

Each case of MS is different no one can say how any of us will progress. It is all about which nerves get cut. Location, location, location.

Alex

[ceeweed]

shoot well it does sound like the research could be bogus now that i have heard such amazing stories from all of you! Thank you for that.

Perhaps I had it wrong and that O-Bands are just a part of the CSF fluid that they will be researching (ie, protein, elevated IgG, etc.)

I really do thank all of you for this info though, and i think Quix said the same thing as HVAC about the number of O-Bands and the length of time you have had MS but clearly something is amiss for those without O-Bands - or perhaps those will be atypical cases? I know it is unlikely that I have had MS for that long that would warrant 10 O-Bands ... unless i am completely forgetting something that could be related years ago.

It's a little frustrating. It would be nice to know how it will progress, and take some of the unpredictability out of this disease.

[HVAC]

I have 12o-bands. I was told it is because I have had MS a long time. The doctor said they are like tree rings. I have documented Neurological problems since 1965.

Alex

[anon07072023]

I'm another one with no more o-bands than I should have.

I've been Dx'd since July 2010 but had symptoms since about 1/2009.  I have 6 lesions in my brain, 3 T1 black holes, & at least 2 spinal lesions.
I think my disease effects are significant and I am one of those ones that doesn't have relapses - just constant progressive symptoms.

[Lulu54]

I have o-bands but my neuro is not a counter and really doesn't talk to me about the number - I would have to pull out my old test results to tell you.   I think that sounds like a good rainy day paper search.  :-)

Really I had hoped they would eliminate doing the lumbar puncture for MS diagnosis completely, since it doesn't give proof of MS and it only supporting/circumstantial evidence.

I'm sorry you have joined our club with your diagnosis.  This ca nbe a tough disease to live with and you are doing the smart thing and trying to learn all you can.   I hope we will see you around, Laura

[byyygrace]

Diagnosed 2012, a few brain lesions, several spinal lesions, 0 Obands.

[SarahL2491]

Over 10% of MS PTs have no O bands

[essdipity]

Dx 2008. No o-bands per LP.

ess

[gypcwmn]

I have 20+ brain lesions 2 spinal lesions. No o-bands. Diagnosed with MS 2009. I have occasional eye problems but that is all

[Sailorsong]

I'm another one of those with no o-bands at all. I am PPMS and have a significant problems due to MS for over 20 years. I have only 3 lesions in my brain and one in my spine. so in just a very short while you have found 3 people on this board that have no o-bands. That should tell you something about this.

It sounds like this research in just another junk science thing to waste resources that could be better used to actually find a cure or better control of the disease.

[ceeweed]

Yes they will be using this as a biomarker. I am no scientist so i don't know how they will decifer between these oband and other diseases ... those are really good points. I will defenitely send the link once i find the article again.