PwMS Dx ~ Did you have O-bands AT THE TIME OF CONFIRMED DX?
 

We have often talked about the % of people with MS who have O-bands, and I am wondering how many people here, with a confirmed dx of MS, had the required 2+ O-bands (or were even tested, etc.)?

Cherie

I was diagnosed with MS in spite of the fact that my spinal was normal. It was the only thing that kept me from being diagnosed much earlier, but eventually the doctor had to say that I must be one of the few that has MS, but has a clear spinal.

All of the doctors I saw thought that a spinal was not necessary for diagnosis.

My MS neuro who diagnosed me said that LP's are not necessary, or at least it wasn't in my case. I had lesions on the brain, and a history of two relapses with classic symptoms as well as other lingering symptoms.

The previous neuro I saw did do the LP, and it turned out negative. He however, was not an MS specialist, so maybe that's why he wanted the additional tests to be sure.

My current doctor is familiar enough with MS that he didn't need the LP.

they didn't have that test available way back then, in the dark ages of my Dx.

:)

I didn't even know about O-band testing until I read about all the LPs going on, here on MS boards, and somebody posted this:

OligoClonal Bands (Gamma Globulin Bands) - A positive finding from the chemical analysis of ImmunoGlobulin (IgG) found in Cerebrospinal fluid. IgG Bands indicates an Intrathecal production of antibodies. This signifies an Immune response to a nonspecific CNS Antigen.

IgG Banding is commonly found during a current or very recent exacerbation. It is present in 50 - 75% of patients undergoing a diagnosis for MS, and eventually in 87% - 95% of all MSers.

http://www.geocities.com/HotSprings/3468/gloss1-o.html

I don't think they were specifically looking for O-bands when they did my CSF testing (also back in the dark ages), but the test was botched, so they never found out anyway. :cool:

They never asked after that. :D

Cherie

Yup. I had two MRIs with an interval change between. The LP was completely unnecessary (and a hideous experience) but I did it anyway just to give my neuro some piece of mind in my dx (since I'd not had any symptoms to date). I should several O-bands. That was enough to cement it.

I only had an MRI - and it was conclusive enough to dx me without the LP. I would not have had the LP even if the doctor had suggested it.

My LP was inconclusive. The phrasing by the neuro was "abnormal, but not totally positive of MS"

Took back to back flares to dx me - proof of that time and space critera

I had only one O-Band. Do normal people have one O-Band? I nver understood what themeaning of "one" O Band is.

I had 4 o-bands.

I had none at diagnosis MRI was conclusive as well as EMG's but now I look like a big bowl of spaghetti o's.

I had O bands at dx and an elevated IgG index. 5 years later, no O bands on retest and the spinal fluid showed evidence of an inflammatory process, which two different neuros said was strongly suggestive of MS in the absence of any other cause (which there is none).

This is kinda' funny, the way they have written this explanation . . . it (almost) implies that exacerbations influence whether O-bands will be found at any point in time. :confused:

I guess what they mean is that if a person (without a current dx) is currently in an "attack", that might be a good time to test them. Otherwise, it is my understanding that once we have O-bands, we always have them. That is not necessarily true for other diseases, because those people "heal" from the disease (and O-bands). . . but apparently we don't. :(


Apparently one band is called a Monoclonol band (HA! :p), vs our Oligoclonal bands. It seems we need two to assist with the dx:

http://cat.inist.fr/?aModele=afficheN&cpsidt=18296300

http://en.wikipedia.org/wiki/Oligoclonal_bands

Cherie

Cherie, when I was going through the diagnostic process I was having a severe exacerbation although I didn't know it at the time.

My neuro said we had a better chance of the LP showing something than had I not been in an exacerbation. In my case he was correct. The LP was the only positive test I had. Brain MRI was clear as was the Mylegram, VEP, bloodwork and others I can't remember.

I was dx'd based on the positive LP, neuro exam and symptoms. One year later I had my second severe exacerbation so that resolved any doubt anyone may have had, including myself.

I saw a graphic picture showing 1 line (blood) next to 1 line (spinal fluid).

If the bands on the line of the spinal fluid were the # of obands, I'm not kidding when I say there were 12 + showing on that page!

I'll get my neuro to photocopy it... it's kinda neat looking actually! Then I can maybe scan and link it here :)

Well, that kinda' speaks to what CayoKay posted, but it doesn't change the fact that you apparently should STILL have just as many (if not more) O-bands now as you did during that attack.

If the information I have is correct, the best time to do a LP diagnostic test is when the person has a neurological attack. That doesn't necessarily mean you didn't have those same O-bands previously, there is just more chance that more (or the first positive result for them) might "pop up" during this neurological event. Does that make sense?

O-bands in MS are "permanent" once they are there though . . . at least that's my understanding.

Cherie

See, I'm just :Scratch-Head: over the change in my banding situation. Maybe the first test WAS wrong and I didn't really have bands. My neuro (Dr. Flip Flop aka Dr. Wishy Washy) never said how many, just that there were "bands." And the test results that I have don't indicate how many. And in February this year with the latest LP, I don't have them. Just makes you :confused::confused::confused::confused:.

But I'm not going to stress over it. Not worth it!

I was DXed in the olden days by the results of a Myleogram and a process of elimination..:confused:

I remember my Neuro saying, protien in the fluid. I don't remember the mention of O-bands. That's the only LP I ever had.

An MRI, almost 20 yrs later, only confirmed the MS DX.:cool:

Well, if that is happened (and IF my understanding about O-bands is correct), attached is a list of diseases (besides MS) that the O-bands should heal in:

http://www.diseasesdatabase.com/resu...ClassSort=True

(Don't stress though!)

Cherie

So can I select one from column A, one from column B, and two from column C? Or should I just pick the one whose name I like the best? :D (I kinda like the latter method the best.)

:D

Awe, could at least let us all have some fun by posting another poll to come up with the best dx for you . . . please. :p

Actually, I could narrow it down for you with a prior posting:

Cherie

I had 11 O-bands, but only 1 lesion (in my neck).

I remember the (seemingly) suppressed excitement of the neuro doc and his PA, hoping that I could remember any previous 24+ hour Sx. I finally remembered I'd been to the chiropractor twice with a numb leg about 15 years ago. They practically jumped for joy.

That was April 13, 2007.

I was jumping for joy it wasn't something much worse/life-threatening.

:DI voted - I had > 2 but I actually only had 2 - there was no option for equal to two ;)

Cherie, my understanding is that they don't go away with MS... least after hearing my neuro say, "Think of them as the age bands on a tree".

Wanna post a poll? Go for it! Just be nice..... :eek: :D

Seriously, I had TONS of bloodwork when I first got sick. Nada. Nothing. That is, except for the lovely abnormal LP results.

Doc 1 at this facility I'm at now said he thought maybe my first LP wasn't totally done correctly and that's why he ordered another. He also told me to get a ton of bloodwork done--again--too.

Nada. The only thing that showed a positive was the ANA but there was another titre done and that tested negative.

Chest CT was done to rule out pulmonary lesions, which a lot of MS mimickers have. Nope. Nada on the pulmonary lesions too.

I'm alternative dx free right now. Gotta come up with better than that. I'm thinking MS. :D And it ain't all in my head---I got a thoracic spine lesion too to consider. It's just getting docs to agree on "hmmm.... I see none" or "Hmmm..... I see one" or "Hmmm..... I see two lesions."

As reasonable neuros can differ in their opinions, so do I with those who don't see any where others saw at least one. And radiologists saw NONE, even with a BIG lesion in the CC.

Maybe I should just hand them MRI cards and tell 'em to "Go FISH!"

I'll only offer up the lesser of the evils, so we can limit the "disease" to something that is simple to fix. :D

I still think it's MS, and something messed up with the LP. Time will usually tell-all.

Cherie
___________

So far, this poll seems to be panning out similar to one we did several years ago. I think about 50% knew they had O-bands . . . not close to 90% that we read about all the time.

I posted >2, but I had 2 with elevated whatever, but I did not and still do not have lesions showing on MRI. I was diagnosed by findings of my LP and the fact that I had had 2 exacerbations.

My MS presented atypically, and my lesions were not enough to DX. The LP had enough O-bands to make it conclusive.

:D But I'm thinking "euthanasia," no matter HOW simple a cure, should not be a poll choice.

http://sl.glitter-graphics.net/pub/1...b3rc8vhib9.gif

What do you mean by required 2+ O bands?? Required for what?

You have to have 2 or more O-bands for it to be a positive marker/dx criteria for MS.

Cherie

Maybe this is a bit off topic, but I was just reading the newest issue of the MSQR. It doesn't say that a spinal tap is required for diagnosis, unless the patient appears to have PPMS.

They use MRI studies for diagnosis today. They did say the spinal tap was used with the older Poser criteria along with VEP. So today they only do a spinal tap to rule out PPMS?

It certainly can get complicated. No wonder the average doctor has a hard time diagnosing MS. :confused:

According to the Updated McDonald Criteria (2005) a spinal tap is not required for dx under certain circumstances.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

If you have 2 clinical attacks and 2 clinically defined lesions, no further evidence is required.

If you have 2 clinical attacks, 1 lesion, then an MRI is required, OR positive CSF, etc.

This also states that the updated McDonald criteria using the advanced techniques of MRI are intended to replace the Poser criteria and the older Schumacher criteria for dx.

And yes, it does read Positive CSF as additional data for dx PPMS under the McDonald Criteria.

Thanks for the clarification, Cheryl. Yes, O-bands are not required if everything else pans out nicely . . . it's when it doesn't that they go looking for them.

When people don't have what is needed, the neuro sometimes sends them for a LP to look for O-bands. One is not enough to support a MS dx, in and of itself . . . but two would be more convincing, with either two documented clinical attacks, and/or a MS-type lesion(s) and i.e. one clinical attack, etc.

Cherie

This was the case in my situation...no lesions showed up on MRIs, I'd had 2 exacerbations...that was it.

No LP needed for my DX.:cool:

I had lesions, O-bands, EVPs, blood tests that ruled everything else out. Easy-peasy DX of MS (for neurologist)

Snoopy, did they do a MRI of your spine specifically too, around the time of your LP?

Also, how long did it take before lesions did show up?

Cherie