30 oligoclonal bands in CSF bands only

[jlserak]

Hello,

Today I was diagnosed with MS after getting results of 30 bands in CSF. My MRI's (over the last 4 months also show lesions.) I had my first attack 4 months ago, and haven't had any symptoms since. My Dr. mentioned that 30 bands is "significant." My question is, "Is the number of bands suggestive of the severity/progression of MS?"

Thanks for your replies!

[kwarendorf]

There were no DMD's when I had my first relapse, so I ghuess it's a moot point :-) On the whole I'm in good shape. I get up every day and go to work. If you saw me you'd never know!

Kyle

[HVAC]

Every case of MS is unique. I have PPMS but I am progressing very slowly. Every year or so I notice my walking has gotten slower. I have according to my neurologist had a mild form of MS for 50 years. That said it could change. No one knows. When I was diagnosed I pictured a worse case scenario. It is the same with my cancer. I thought it was the worse case scenario and I am still here and happy. No one knows how anyone will do.

Alex

[bbassel]

I can't help thinking that if I had known and taken the drugs for the ten years I figure I had it, would I be this bad? I don't think so bbut I can't worry about things I can't change. That coUldd drive anyone crazy lol

[Artanis12]

You seem to confirm some and confound others, as do any of us who get diagnosed relatively late, I'm thinking.  The common thread for you and me, and probably a few others, is that certain symptoms were there, they were just so non-impacting or attributable to something else, that we didn't know we should be freaked out. ;-)  You had yours for 20, me for about 10 (I'm thinking).  So am I REALLY "late onset", or not?  Will I really progress faster as they say, or can you equally say, the progression has been slow-ish or normal?  Like there's anything normal about this disease.

Besides, your resistance to being thrown "on the (MS) cart" is probably great and you simply had to go for a walk....

(Kyle, you realize this is going to happen periodically from here on out, right...?)

So yeah, jlserak, retrospect is...something.  Isn't it fun to reexamine every weird symptom you've even had and blown off?  Fun when you start to actually remember some that you'd REALLY forgotten.  I have a few like that.  Good luck on the new med!  We're rooting for you!

Karen

[bbassel]

I never had a LP myselF aand was diagnosed within two months of my first known aattack. My brain and spine mri showed lesions.

The first year I had four relapses and went physically downhill fast. Since getting on tysabri foor over a year I have been relapse free. I am 34 as well. Who knows with this craazy disease! Best of luck
Barb

[kwarendorf]

I'm  not sure whether I confirm or confound the probability tables. I'm male and was diagnosed at 51. I'm not sure how many o-bands I have beyond > 5 unique to CSF. We did a litle arecheology and determined that my fisrt relapse was about 20 tears prior to my dx. My initial, and current, dx is SPMS.

My MS is seems to be moving very slowly. I'm not at all disabled, but do have daily reminders that it's still with me; urinary, bowel and early AM double vision are constants, as is tinitus.

So I'm in pretty good shape :-)

Kyle

[jlserak]

That definitely makes sense. Now, as I read though all this research, I am also finding that many of these symptoms I have had for years. I had Bell's Palsey when I was in 7th grade. But now looking back, I'm wondering if this was early signs, as the exact same symptoms were my onset back in November (face drooping, slurred speech, right side weakness.) I've also suffered from migraines since high school. Oh the beauty of retrospect :)

Anyway, I will start treatment with Betaferon this week. Praying for the best!

Jennifer

[HVAC]

O-bands are like tree rings they never go away my test had 12. The tests for LPs are getting more sensitive meaning if you had been tested a few years ago 30 would have been less. My doctor said it just meant I had MS longer. You could have had slight symptoms and just thought they were normal. The more I know about MS the more I realize I have had symptoms all along. In my case I was first hospitalized for a weird neurological illness no one could figure out in 1965. In 1970 they said I had damage to my brain stem and would have double vision my whole life. I was always clumsy. I had trouble with cognitive in school. I had headaches and vertigo. My reflexes have always been weird. I have always had tight muscles. Since I knew no better I thought I was normal.

Alex

[jlserak]

Thank you all for your warm welcome and replies. I'm just trying to wrap my head around all of this for the time being. I'm sure you'll be hearing from me again! :)

[supermum_ms]

lol i have no clue how old that list really is but it's still referencing "benign disease course" and the only way to really determine the accuracy of 'benign MS' is actually with an autopsy, he does state "It is important to note that most of the studies, from which I draw my data from in this section, were conducted before the so-called ABC treatments (see next section) were in common usage." so it is very very outdated information if it's based on MS research before DMD's!

okie dockie just noticed female automatically put you in the less severe group, though not sure how that could be true, considering MS is dominated by females of varying disability lol hmmmm could of been written back in the hysterical female era maybe? :D

Cheers........JJ

[supermum_ms]

Hi and welcome to our little MS community,

Sorry about the diagnosis Hugs!

I agree with immisceo, there isn't a definitive rule as yet to obands, within a decade the LP has gone from golden standard for diagnosing MS, to not even being required. I have read over the years quite a bit of conflicting information, a) the number never changes (b) higher number of obands 'plus' a lower number of lesions is possibly indicating PPMS (c) increases with number of years or increases during an attack (d) steroids reduce the number by 30+% (e) varying statistics org 95% accurate to 80-85% these days (f) high number indicates possible contamination with blood....these ones have stuck in my mind, not sure that that is exactly helpful, other than i'm still very confused [:D] by what i've been reading about obands.....

A lot of the literature is still mentioning the number of obands is not known to correlate to the severity, duration or course of MS,  so i honestly don't think you can determine the significance of this number in relation to the severity/progression of your MS!

Cheers.......JJ

[Artanis12]

Immisceo & jlserak - I'm always a bit interested in what is considered "disease onset". Considering things like maybe completely missing the signs 10 years ago (and the fact of generally long times from symptom onset to diagnosis for most with MS),  I keep thinking I've actually HAD this for about 10 years already.  But my official onset was at age 51, meaning that statistically, I've got a worse disease course ahead of me. But since I've probably had this for 10 already, is my disease course really worse? Or did we just miss the real onset? Would I have had O-banding 10 years ago if I'd been tested?  I have 8 now, but would I have had some back then, but just fewer? Does number even matter? Who knows.  

Here is an interesting list I found, of factors that are indicative of one course or the other.  I fall into both, and depending on when you say my onset was,  the balance of not-so-bad/bad factors changes.  So what does a person do with THAT?  
http://www.mult-sclerosis.org/msprognosis.html

Factors indicative of a benign disease course:

Initial symptoms purely sensory or optic neuritis.
A long interval between the first two relapses.
Disease onset before 25 years of age.
Few lesions showing on MRI scan onset
Low number of affected neurological systems 5 years after onset
Low neurological deficit score 5 years after onset
High degree of remission from the last relapse
The absence of Myelin Basic Protein (MBP) in the cerebrospinal fluid (CSF) during remissions.
Onset symptoms from only one region.
Female sex.

Factors indicative of a malignant disease course:

A greater number of neurological areas affected at onset.
Many lesions showing on MRI scan at onset
Pyramidal, cerebellar and sphincter involvement at onset.
Co-ordination symptoms at onset.
Progressive disease course at onset.
Oligoclonal banding in spinal tap present in the early phases of the disease.
Disease onset after 40 years of age.
Less than one year interval between the first two relapses.
Motor symptoms at onset.
Brainstem involvement at onset.
Male sex.

Maddening, isn't it? Notice that some of the factors can only be determined retrospectively, as immisceo mentioned, after 5 years. Not all that helpful in my opinion.

I guess this just highlights, for me at least, that definitions in this game are often too fluid to be useful, and trying to find a crystal ball that will help you see how things will go for you, is a pastime that can drive you kinda nuts. I would recommend against it, says she who clearly demonstrates that she has done that very thing herself. :-\


Oh, and last but not least, welcome jlserak, to the club for which we really all wish we did NOT know the secret handshake. There is so much solid info here, and plenty of people who have a longer perspective on MS than you, or ME, and who can help with been-there-done-that, and general calming down. I've leaned heavily on this site's members to keep me sane. I hope you find the same voice of reason here that I do.  

Karen

[immisceo]

This is an area of current research, but the jury's still out. Papers are being published, studies conducted, replications attempted. Trying to determine disease course based on initial/early presentation is a huge area of interest from researchers, but there is little if anything that can be considered a 'rule' in this regard. You're female and 30. Both factors in your favour for a less severe course with MS, statistically speaking. But statistics aren't concrete and are by default determined retrospectively.

The only thing that will really reveal your personal disease course? Time. Not a satisfying answer, but it's the state of the science at the moment.