DX Without Unique O-Bands

[kwarendorf]

Jude3677, a recent addition to our group, has asked if anyone here has been dx'd withou unique CSF o-bands. I thought I'd ask directly.

Kyle

[cjldb]

I also received a quick diagnosis but I presented with clinical symptoms. They did the MRI that showed 3 lesions, and the LP showed I had >5 (that's all the report said) unique O-bands and honestly I often still question my diagnosis. And like the others have said, I think that is a good thing. I also think that if we are still able to question whether we really have MS or not, our health is in a great state. I do not look forward to the day (and hope it never comes) when I know without a doubt that I do, in fact,  have MS!!!!

[SarahL2491]

No O bands for me, had enough lesions and CIS to confirm.....

I think that relying on O bands has slipped out of importance, there are still variables that will never be solved and thank goodness, it isn't the gold standard anymore..........its like the movie Medicine Man, where they went looking for the air plant and it was the ant carrying unknown stuff on his legs that provided the cancer cure............a variable.

good poll though........

[Lulu54]

Jude - I'm loving the questions and doubts because that tells me you are an ENGAGED patient and will do fine, no matter what disease you have.  If I were you, I would also be so skeptical of it being MS and the second opinion, but the specialist, is essential.  

Aubagio is a relatively safe drug, despite all the side effects you can read.  Remember - you know as a pharma rep - that EVERY thing that happens while in a trial for a drug is listed as a side effect, whether it pertains to the drug or not. We know diahreah and hair thinning are the two main complaints from Aubagio, but both of those subside for most people after several months.  

For anyone interested in learning more about o-bands, here is the health page link to an explanation Shell wrote a while back -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36

[Jude3677]

Yes, I will perform another MRI tomorrow, 4 months after the baseline and then, with all the exams I have I will see a MS specialist in Italy, Milan, on 27th of June.

The treatment is with Aubagio (Teriflunomide).

I will have a feedback soon. Thank you all for listening :)

[kwarendorf]

Skeptiscm is god when it comes to our health :-) Have you sought a second opinion? I don't know if that is an option for you. If it is, i would highly recommend that you do. What is the proposed treatment that you are concerned about?  

You are not creating a disturbance :-) You are asking questions. That's what this place is for :-)

Kyle

[Jude3677]

Well ... I keep trying to focus on every single detail as I consider my MS diagnosis was made by rush. We are not talking about an easy diagnosis such as flu, and the treatment that I am about to initiate is not really a safe one.

Because the diagnosis was made in 2 minutes after looking at my MRI, because I told the doctor I was diagnosed with encephalomyelitis 22 years ago and I haven't had any neorological symptoms every since. Because at the clinical exam, I was perfectly normal. Because the the recommandation for MRI was made as a consequence of a parasthesis large as coin around my mouth. Because after almost 20 days of solumedrol, that parasthesis was not remitted and I started to take Magnesium and B6 complex supplements and after one more week, the parasthesis disappeared.

And because I have the right to understand how come I am a normal person with no nerological sympthoms, but with a severe diagnosis written on a paper.

I do apologize for disturbance.

[zoefromsussex]

I had O bands when I got my lp result but the doctors in the UK don't give any details other than to say o bands were found in the csf. I think they did also say something about it not being in my blood but I could be wrong!

[kwarendorf]

Try not to focus too much on O-bands. All by themselves, the presence or absence of o-bands tells you very little about whether or no someone has MS. As you can see from the responses here it can go either way.

The other results, like MRI, blood tests to rule out MS mimics and most importantly the clinical exam, all need to be considered.

Kyle

[Maks322]

I have 5 obands unique to CSF.  Diagnosed with MS

[Jude3677]

And to bother you for another thought that results in my mind as a consequences of your answers: Is the presence or the absence an indicator of the status of the MS? Taking into account that, as far as I am concerned, the BBB is not bleached and in IGg index is within the normal limits, may I consider this status as a good one?

Hoping that I am not too overwhelming with all my questions :-)

Thanks,

Jude

[Jude3677]

Thanks for the poll, kwarendorf! So the statistics are not accurate so far... they say 99% MS patients have O-bands present, but we have here 70% with NO O-bands ...

[Doll555]

No o-bands...tested shortly after my first ms symptoms. Still dx with ms based on clinical symptoms and MRI. Have had several relapses since.

[maxthecat43]

No o bands for me.

[immisceo]

I have 2 unique bands as of my November 2010 sample collections but was told that (at the time) this was not a 'homerun' for diagnostic purposes. I think some schools of thought want 4+ uniques to be considered for an unambiguous 'positive'.