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hi folks,

when i went through my diagnostics with my neuros (there was more then one), my CSF was negative for the oligoclonal bands...i have since read articles stating that around 10-15% of people positive for MS have this result with their CSF studies...i don't know if this is an old topic or not, but i was just wondering if anyone else also had a negative CSF...and, if so, if anyone has any info on how that may play with the course of the disease...

thanks in advance,

thinkingoutloud

neg bands, that's awesome! i am working on reversing my positive result - nobody likes OB :S

so, in thinking about the future, i would like to ask what ms is like for you in the now. as in, what do you feel day to day, what was your mri like, what is your diet like, do you have l'hermitte's, how did they arrive at your dx, etc

i think not having OB sounds pretty positive off the top, but i don't know the rest of your story!

legs

Hello TOL,

As far as I am aware, the presence of Oligoclonal bands means very little on its own: it must be included together with a host of neurological test results in order to point to MS -- I'm guessing that your team of neuros has already done this.
Also, the presence of OCBs has no relation with the extent of demyelination.
If a person has acute transverse myelitis, the presence of OCBs does indicate an increased likelihood of progressing to MS.
There are quite a few other diseases which will give rise to OCBs, like bacterial or viral meningitis, neurosyphilis, polyneuritis, and other auto-immune diseases.
I have banding myself, but have never been told that it has an effect on disease course. You're right to say that a certain percentage of MS patients tests negative for this, but if the battery of other results points towards MS, they are given a "positive" diagnosis ,

Dom.

Dom,

Very true. I tested positive for OCB's (I was a 41, whatever that means, and the threshold was 40).

My MRI showed multiple enhancing lesions, and my VEP test showed a delay in my left eye even though my right eye was the one that was affected???? The brain is a complicated thing.

I've only had the one sypmtom since June '05, but I may be having a replapse right now. I am going to the Neuro today to find out whether it is or not, I suspect it is though.

I wonder if my disease course will be worse since I wasn't able to make it quite 2 years before I was relapse free? It concerns me to say the least. Of course right now my EDSS is 0, but that can change in a hurry.



Brock

Presently, most research indicates the significance of OB is debateable. It is an added indicator of MS, more often when other findings are inconclusive but cannot be relied on as Dom mentions as the only or most significant indicator of MS as they can also be found in other conditions.

There isn't really much consensus on what it constitues in terms of the overall course of MS. You will find some people with negative OBs that have Primary Progressive MS yet others that say negative OBs is more prevalent with milder disease courses. However this may also be contingent on other factors such as number of T2 lesions on the baseline MRI. Other studies point towards OB positive and OB negative MS as immunogenetically distinct even though the clinical disease course is the same.

Another problem seems to be a lack of standardisation in sampling CSF fluid which may also query the findings of positive or negative bands.

I had a lumber when I was 17 that showed postive OBs but more than 25 years later I still have an EDSS of O so, at least in my case, it has made no difference so far.

Manchester

everyone...thanks for the info...viper...sorry to hear about what has been going on lately...good luck with your visit with your neuro...

dom...i thought that might be the case...i think i still hold some hope that there may be more to the neg bands, then probably is...

legs...i've had one attack (at least that i've known about) that occurred in november 2004...there were some signs leading up to things in the year prior...for instance, i was falling down frequently when playing basketball in 2003...in november 2004, my left foot kept catching the ground when walking and i started having numbness on the left side of my body...also, i started having mild balance problems...at first, i was afraid i was having a stroke (THANK GOD that wasn't the case!!!)...however, the positive of it is the fears of it motivated me to see a neuro pretty quick...as i said, bands were negative...but, MRI's were postive for about 4 enhancing lesions around my periventricular white matter as well as about 4 or 5 older lesions...also, had one enhanced lesion on my spinal cord...

they put me on steroids pretty quickly...but, as strange as it sounds...my symptoms seemed to worsen for awhile...i developed vertigo and had even more problems with my balance...thinking became a little "fuzzy" too...most of the symptoms remained at their level for about 9 - 12 months...after several months, i tried to exercise a number of times over the next 6-9 months, but would feel more dizzy again and the numbness would increase on my left side of my body...

these days, things are going much better...i am probably at about 98% of where i was before the attack...still have a few residual, mild symptoms, but they are more of a nuisance, then anything else...however, i probably put on about 15 pounds in this past couple of years (not good weight) and my strength in my legs is still not what it once was...on a side note, i've heard from a number of people how i should be exercising (which i want to do), but with all that is still unknown with this disease, i have some fears that somehow, that will induce inflamation in my CNS and another attack...

by the way, manchester, what do you mean by "immunogenetically distinct"?

TOL

By immunogenetically distinct I mean in this sense the genetics of the immune system (or the genetic and immune interrelationship if you like) for OB negative may be different to those for OB positive. In this case- at least at the moment -it doesn't seem to have any clear influence on the disease process. But this doesn't mean it doesn't -only researchers haven't found out, or reached any consensus, that it does.

It can also mean, for example, why some research points to distinct different types of MS- in some Asian people to Caucasian or to PPMS and RRMS as two completely separate diseases entities -immunogentically distinct.

By the way excercise is a really good thing. Some studies have pointed to a possible neuro-protective benefit, others to it having an affect on fatigue and even some symptoms. Obviously take it easier if you are having a relapse but otherwise as they say if you don't use it you lose it!

Manchester

Manchester wrote:Obviously take it easier if you are having a relapse but otherwise as they say if you don't use it you lose it!

I think that's a very good point.

It's always possible to find an example of someone whose disability advanced despite exercise and proper nutrition but unlike the majority of the population, someone with MS doesn't have the luxury of using such examples as an excuse not to eat right and exercise.

At this point it's all about buying time. Although nutrition and exercise won't cure MS, a sensible person is going to realize that exercising and eating right will buy precious time.

To get back on topic, my wife has been diagnosed by three neuros and is enrolled in a clinical trial and has never had a spinal done.....although she admittedly doesn't have any lesions on her spine.

Bob

About the exercising question. I asked my neuro if exercising too much could cause a relapse and he said absolutely not. I do have a few reservations though because my 2nd relapse happened shortly after I strained my weak leg (right) exercising. It was weak and tingling and then I had balance problems and voila- other symptoms came and I had another lesion. I believe that exercise doesn't cause relapses and yet, I think it contributed to mine. I would say don't over-do anything just to be safe.

TOL, I had one "undefined" o band on my spinal tap which the doctor said was inconclusive. I was then dxed with Acute Disseminated Encephalomyelitis with TM. Almost 2 years later, I had my 2nd attack and they then dxed me with MS. I guess Dom's right about the increased likelihood if my undefined band counts. That relapse was relatively minor and I have had one more, possibly pseudo, relapse since then. Very minor. I think my EDSS would still be 0 even though I do have a few residual symptoms. I also wondered if the fact that I didn't have any distinct o bands made a difference in progression but I have honestly not found any conclusive info either way.

Brock, I also was worried because I didn't quite make it 2 years till my 2nd attack. So far I've been doing ok and I'm just going to concentrate on that for now. You may never have another attack. We just never know what will happen next. Best not to stress yourself out over things that are out of our hands. Try and stay positive.

Judie

scoobyjude wrote: Brock, I also was worried because I didn't quite make it 2 years till my 2nd attack.

Hi Judie,
I keep hearing this "two year" thing. Is there some kind of rule of thumb regarding a second attack in more or less than two years that I haven't heard?
Bob

Bob, alot of the info I read after diagnosis says that if you can make it at least 2 years until your 2nd attack, your prognosis is likely to be better. I don't know how much stock you can put into it but it has obviously stuck in a lot of our heads.

scoobyjude wrote:Bob, alot of the info I read after diagnosis says that if you can make it at least 2 years until your 2nd attack, your prognosis is likely to be better. I don't know how much stock you can put into it but it has obviously stuck in a lot of our heads.

There does seem to be a bit of common sense involved in that one. Thanks Judie!
Bob

judie-

first of all, sorry to hear that you had your second relapse, but i'm glad to hear that it was minor...i just past my 2 year mark a few months ago (if one looks at when it started, not when it ended)... i've come across articles that mentioned the 5 year and 10 year marks as important markers, but don't recall where i read them...it's interesting that you mentioned ADEM...there are a number of other conditions i wondered about, given the neg bands...for instance (i know diet is addressed in other threads and i'm not trying to open it up here), i was allergic to gluten as an infant and was even on a restricted diet (based on the limited diagnostics available in the late '60s)...supposedly i outgrew it and returned to a normal diet, but when the attack happened, it raised questions...

as far as exercising, i've heard similar info from a former neuro and in fact, he made a point of the importance of exercise...before the MS, i was pretty active...it is something that i think about and will probably do again...but there is some trepidation...with how much we don't know about MS (even by the most renowned experts), i've sometimes wondered if raising body temperature during exercise can be something that induces an autoimmune response towards the CNS (as, it also heats up). to be honest, i've never read anything to suggest it, but it just seems something at face value seems could be a risk....

TOL

Hi TOL,
Curiousity drives this question and nothing more

i've sometimes wondered if raising body temperature during exercise can be something that induces an autoimmune response towards the CNS (as, it also heats up). to be honest, i've never read anything to suggest it, but it just seems something at face value seems could be a risk....

Are you referring to the possibility of increased body temperature triggering the beginning of the MS disease process itself, triggering an exacerbation or triggering an increase of symptoms?

Bob

well...i think it is pretty well known how it can cause symptoms to flair up (which i did have when i exercised shortly after the attack)...what i am more referring to now is if you have a lesion (albeit, one that maybe isn't active) and the cns heats up...is the autoimmune system drawn to the cns and the lesion that is already there (in an effort to deal with it)...as i've said, i have nothing to base this on besides speculation

TOL