Hello, Summary, I have been diagnosed with MS in 1993, then a syrinx found (i.e, other possible cause) which never grew and a huge attack in 2000 (brain MRI with lesions and history of Optic neuritis, 2 sets of SSEPs 4 years apart both abnormal and median abnormal above syrinx site which had shrunk and finally spinal tap which previously only showed elevated lymphs now had elevated Igg synthesis and index (apparently elevated 10X lab normal). Moved to new town and had myoclonus badly which bothered new neurologist but has been resolved. He had stated to me not enough evidence??? But I got a hold of detailed CSF which had hospital perform in 2007 which wasn't in his file (have new neurologist) and CSF no longer has elevated IGG synthesis but reads as follows: "OLIGOCLONAL BANDS: BANDS NOTED (reference range : no bands) "The patient's CSF contains >5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample. These bands indicate abnormal sythesis of gammablobulins in the central nervous system. This finding is supportive evidence of multiple sclerosis , but should be interpreted in conjunction with all clinical and laboratory data pertaining to this patient." I also had high CSF protein, Not Myelin Basic Protein. My question to you is based on that statement, doesn't that mean I have Ooligolconal bands meeting the CSF MS criteria. I got a little confused by the words synthesis and gammaglobulins in the paragraph but this was a comprehensive report and certainly this was the only section about Oligoclonal bands and the one noted out of range. If you agree, wouldn't it have been prudent for the physician to have the detailed report? Additionally, I am surprised that my body chemistry would change so much as to have such high Igg sythesis in 2000 not be elevated now and have now Oligoclonal bands in 2000 and > 5 now. Any thoughts would be greatly appreciated.
I am so sorry this question went unanswered. I know you have already posted on the patient forum, but I can add a little more info to the question you asked here.
In the CSF they measure a couple different things having to do with antibody formation.
One is the overall production of antibodies. To understand this you have to know that the real name for antibodies in medicine is "immunoglobulins." There are several different kinds of immunoglobulins, of which the most common is "gammaglobulin." (short for Immunoglobulin Gamma) The short way to refer to gammaglobulin is IgG. (Other forms are (IgM, IgA, IgE and IgD)
In one test they measure the overall amount of antibodies of all kinds that are currently being produced in the CSF. This calculation gives the rate of IgG Synthesis. In times of very active immune activity in the Central Nervous System the IgG Synthesis rate will be elevated, but if the immune activity (also referred to as immune inflammation) settles down, the Synthesis Rate will also drop. A couple of examples where this would happen are 1) New inflammatory MS lesions (which might enhance on MRI) would cause the Rate to go up. As the inflammation dies down, the Rate will also drop. 2) A brain infection, like encephalitis, will cause the IgG or IgM Synthesis Rate to rise and then drop as the infection clears. In this test they measure ALL of the IgG at once and it may be made up of hundreds or thousands of antibodies. During a person's life their Synthesis Rate will increase and decrease many times.
Another test they do is looking for the production of large amounts of a single antibody made by clones of an antibody-producing lymphocyte. These are run in a test that allows the group(s) of antibody to be seen as a "band" on a substrate like paper or gel. The test is a type called electrophoresis and each different antibody shows up in a different location, called the Band. In this test they are looking just for those individual antibodies that exist in huge amounts and there may be none, a few or several of these. These resulting bands are called "Oligoclonal Bands." The word comes from "Oligo - few" and "Clonal - from 'clones.'"
Here is a place that has great pictures of what the "Bands" look like on the test.
(Please note that the results of #4 and #5 here have been reversed)
In MS, oligoclonal bands tend to persist for life. So their numbers will stay stable or increase in the future, but will generally not decrease.
So, my answer to your questions would be to say that it is certainly possible that the IgG Synthesis Rate could increase and decrease with the amount of inflammation going on at the time of the LP. The O-Bands appeared after the first LP and before the second one. You will likely always now have O-Bands.
When the doctor orders an LP for the purpose of ruling MS out or in, he does need ALL of the information that the testing can reveal. Yes, he should have had it and should have taken note of it.
That part about how I could have the higher Igg synthesis and index in 2000 and not now was perplexing me and making me think there was a mistake. So I thank you very much as I had been diagnosed originally (remember the long story) time/space, clear Optic neuritis and SSEPs repeatedly abnormal which was the para clinical evidence and that was 1993 which I don't know if it fits the criteria now. But during the 2000 attack when the 10X higher than lab normal Igg synthesis and index came up what is very interesting and matches with your point is for the first time, (and these tests were done all around the same month) I had white matter lesions and having a good neurologist, he looked at them himself. He showed them to me, where they were on the scans and listed what different things they could represent and crossed off all the mimics that had been ruled out.
So that is such useful information to me as I do know that the 2000 scan showed more lesions than ever. I have had one after that though that was barely one to be found but the more they do of my cervical spine, the more they start finding things, so now I am very far progressed as far as function and have what I have stated is a great new neurologist but he only has a letter stating emphatically that there are NO "O" bands and I am working with my primary to get this information to him in an official way.
What is also curious is the MRI he had done on the same day as the newest CSF where the O bands were found (but as stated he either is neglectful in getting detail or really doesn't want to admit I have them) - anyway that MRI had what was stated as white matter hyperintensity which could be due to demyelination".
As usual with this terminated neurologist, he stated he had complete faith in this radioloist and doesn't look at scans and told me my MRI was completely normal. I was totally shocked as any time there is an indication of anything related to a lesion, lesions, no matter what the radiologist calls it, I think it prudent that the Neurologist look at the scan.
My new neurologist spent 45 minutes upon my arrival looking at every scan. It might have been longer. I know my physical exam was at least 1 1/2 hours and my history which he wanted to write himself from my statements was another 1 1/2 and this is compared to the 15 minute initial appointment with 5 minute follow ups that I got with the other guy.
Thank you so much for explaining this as I feel much more comfortable presenting it to the new Neurologist who said he was sure this was MS but really would like to have seen "O" bands by now. Like I stated before, I misread the report and didn't realize I had them also because the other neurologist yelled at me that I didn't have them.
So this is more education for me, explaining why I had so many lesions with the tap in 2000 and don't have as many any more. This new doc must be brilliant to have guessed that based on all I told him and the smaller lesion activity and no Igg synthesis now that there should be O bands. He even said, he felt if I had a tap and the right lab that O bands would show but he didn't want to put me through that right now. I just have to find the proper way to let him know (without giving him my story of the other doctor's complete incompetence and screaming history) and I've chosen to do it through my primary if she is willing.
Thanks a million. Hope to hear a confirmation from Dr. Kantor soon but you've helped me quite a lot.
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