Neuro says o bands/ elevated IGG a must

[meb62]

Saw my neuro yesterday. Here is a statement from my file. "Lesions are more in favor of MS, lesions separated by space and time more in favor of MS"
Had LP, came back normal except IGG was low. Before LP she had said 99.8 % MS. Even said based of location of lsions that it was "classical MS" . Now she says " I don't know". She said she has never had a MS patient without O Bands. and O bands or elevated IGG was definate must for MS.
Have at least 13 lesions. Including one C- spine lesions which she said she did not " appreciate".
So here is my question, how many of you have had a neuro tell you O bands or elevated IGG were a must for MS.
I am in the process of getting a referral a MS specialist.

[laurasari]

I am glad you are getting a second opinion because I believe I have heard others say they were diagnosed with ms without o bands. I am not even sure if I had them. good luck

[SNOOPY]

Hi meb62,

The LP and positive results (o-bands) was how I received my definite diagnosis of MS.

Some here on MSWorld received a MS diagnosis without having a LP or without o-bands. Others, like myself, had positive LPs (o-bands).

From The National Multiple Sclerosis Society:
a spinal tap, detects the levels of certain immune system proteins and the presence of oligoclonal bands. These bands, which indicate an immune response within the CNS, are found in the spinal fluid of about 90-95% of people with MS. But because they are present in other diseases as well, oligoclonal bands cannot be relied on as positive proof of MS.
http://www.nationalmssociety.org/abo...-ms/index.aspx

[MSer102]

I'm glad to see that your getting a referral to an MS specialist neuro. I think it would be a good idea for you to print out the information from the National MS Society and take it with you as backup to ask the neuro about the O bands. That way the neuro can't brush off your question or tell you your making it up.

[Mable]

You might be interested in this article. The researcher says he thinks doctors should wait to diagnose MS when there are no o-bands. This is likely why your doctor is reluctant to call it yet.

http://multiple-sclerosis-research.b...do-anti-b.html

"In my opinion OCB-negative MSers don't have 'classic MS' and should be given a separate diagnosis or the diagnosis of definitive MS should be delayed; this is particularly important when diagnosing PPMS! This is another reason why lumbar punctures and spinal fluid analysis should be done in all MSers. You only get one chance not to make the diagnosis of MS and that is in the beginning or the diagnostic phase of the disease. Spinal fluid analysis helps you exclude other conditions and tells you if you have OCBs or not."

[MinnieGirl]

Positive LP Isn't Yet A Requirement...

... In the MacDonald Criteria. That is supposed to be the guideline followed for diagnosing MS. Good grief, it seems like doctors are just making up their own rules. For example, if you have clinical symptoms/lesions, some lesions in his/her brain (to make this simple, we'll say they are "typical ovoid lesions," then have another MRI later that shows new lesions or even enhancing ones and testing has ruled everything else out, then by following that logic, that individual would not be diagnosed.

We see so much about how important it is to start treatment early, yet the person may never have a positive LP so then what? So is the patient just expected to keep having this invasive procedure done until it becomes positive?

I understand they don't want to give anyone a wrong diagnosis but good grief!

[SNOOPY]

MinnieGirl

A Lumbar Puncture (LP) has been part of the diagnostic MS testing for a very long time and is still listed within the McDonald Criteria.

If a Physician finds enough evidence to diagnose MS without a LP then they won't do a LP. Some neuro's prefer to do a LP for more confirmation of MS, some don't.

I personally would not do multiple LPs, some with MS simply do not show o-bands but the percentage is small. Once you have o-bands you will always have o-bands.

[SNOOPY]

Lumbar Puncture and MS information:
http://emedicine.medscape.com/articl...up#aw2aab6b5b8

[MinnieGirl]

Hi Snoopy

I believe we were saying the same thing but in a different way.

Yes, the LP is one way within the MacDonald Criteria for assisting in diagnosis, yet it isn't required. There are several different combinations to meet the criteria, but it doesn't state that a positive LP is mandatory in order for one to be diagnosed.

[mjan]

Well sorry you are in limbo and going through this uncertainty.. remember it well~
I had many lesions but my symptoms were not severe enough and not right shape/location..LP=normal. Then had to leave this MS clinic and was told, No, you do not have MS.

Then got into some other illnesses/disorders and again MS suspected. No changes. Finally got the right shaped lesions (which YOU already have) in right places and was told it was MS. I was not ready to hear that at that point.

Had a 2nd opinion and yes, was told I do have MS.

So yes, you can have a normal LP and still get MS DX.
Hang in there.. the answer will come. I would get a 2nd opinion for sure.

Let us know what happens.
Hugs, Jan