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oligoclonal band negative, any impact on MS diagnosis.
Ok, so My neuro tells me on 11/13/07 that I have MS. He mails me results of my testing 2 weeks later. MRI shows plaques, in muliple areas. I have multiple in the corona radiata, and 2 Lesions in the right genu of the corpus callisum. None on the spine. The T spine shows herniation of disk in T8-T9, and CSF is OCB-. So, he will start Avonex for the MS ( just waiting for the HMO red tape)
I got the MRI on CD, I look at it and there is white spots on every image of the gad-contrasted views. All different sizes, most are circular/oval. One is a weird shape, like a worm. I don't know all that much but, I wanted to maintain copies of this stuff for future reference if I ever change docs.
Ok, so how important is OCB's. If someone is OCB- is it still MS? I have found so many conflicting stuff on the internet, saying it can be just as progressive, then it could be a "benign" form of MS. How can having multiple scarring of your brain be ever considered benign?
By the way has anyone had sudden deafness in one ear, no ringing, or any type of warning, just the feeling someone shut that one "speaker" off, only for it to return like 5-10 minutes later? weird new thing I guess. Appreciate anyone's input on this. Thanks Chrissy in LI
I got the MRI on CD, I look at it and there is white spots on every image of the gad-contrasted views. All different sizes, most are circular/oval. One is a weird shape, like a worm. I don't know all that much but, I wanted to maintain copies of this stuff for future reference if I ever change docs.
Ok, so how important is OCB's. If someone is OCB- is it still MS? I have found so many conflicting stuff on the internet, saying it can be just as progressive, then it could be a "benign" form of MS. How can having multiple scarring of your brain be ever considered benign?
By the way has anyone had sudden deafness in one ear, no ringing, or any type of warning, just the feeling someone shut that one "speaker" off, only for it to return like 5-10 minutes later? weird new thing I guess. Appreciate anyone's input on this. Thanks Chrissy in LI
Hi, Welcome to the forum! I will answer your questions, but I'm going to ask that you re-post your question on the front page of the forum. Here it is buried in someone else's thread and people might not see you. You ask a good question and we should discuss it on your own thread. Just do a copy and paste and go to the front page by clicking on the "Back to Forum blue button at the botton here and then click "Post a Question."
In your new post would you also answer a few questions?
How was the ON diagnosed in September? Did you have a VEP?
Did you have any abnormalities on your neuro exam then and now? Any new ones this time?
Hope to see your answer soon.
Quix
In your new post would you also answer a few questions?
How was the ON diagnosed in September? Did you have a VEP?
Did you have any abnormalities on your neuro exam then and now? Any new ones this time?
Hope to see your answer soon.
Quix
WELCOME,
HAVING ON IS USUALLY ONE OF THE FIRST SYMPTOMS OF MS,
HAVING A THORACIC MRI MUGHT BE IN ORDER.
A LP CAN RULE MANY DISORDERS OUT AND MANY WITH MS HAVE A POSITIVE LP.I HOWEVER HAD A NEGATIVE LP EXCEPT FOR HIGH MYELIN BASIC PROTEIN.
CZ,SINCE YOU ARE NEW HERE MANY WON'T SEE YOUR POST,JUST A SUGGESTION ,START A SEPERATE POST SO ALL OUR CYBER FAMILY CAN WELCOME YOU
T-LYNN
HAVING ON IS USUALLY ONE OF THE FIRST SYMPTOMS OF MS,
HAVING A THORACIC MRI MUGHT BE IN ORDER.
A LP CAN RULE MANY DISORDERS OUT AND MANY WITH MS HAVE A POSITIVE LP.I HOWEVER HAD A NEGATIVE LP EXCEPT FOR HIGH MYELIN BASIC PROTEIN.
CZ,SINCE YOU ARE NEW HERE MANY WON'T SEE YOUR POST,JUST A SUGGESTION ,START A SEPERATE POST SO ALL OUR CYBER FAMILY CAN WELCOME YOU
T-LYNN
Thank you for your info. I'm new here but am curious.... I had optic neuritis in Sept 07. Dec 07 had an episode of bilateral leg weakness, right arm weakness, plus pins and needles. I've also had Llermettes, bladder symptoms and some other weird stuff. My legs were so bad I could hardly walk for 6 days. It's been 5 weeks now and I am just starting to really feel normal again. My neuro highly suspects MS but Brain and C-spine MRI were negative. Now I'll have an LP soon. If this LP is negative, what will likely come next? Will I likely be left in limbo land or what? I'm curious is all.... thank you!
cz
cz
I have had alot of weird symptoms since late 2004. All of which came and left, repeatedly. I went through a whole battery of tests in july 05, all but the LP. The symptoms were "off center" feeling, that made me off balance, dizziness, muscle spasms (weird ones, not just your ordinary charlie horse) in the toes, feet, calf, thigh, hand and neck, blurry/double vision, drunken speech/poor choice of wording, and the shaking eyes...they would make reading tough, as the words would be shaking left to right all jumbled. That was the one symptom that lead me to the neuro. On the first MRI in 2005 it said I had a few foci in the subcortical bilateral corona, and 1 in the corpus callisum, and differential dx would be demyelating or vascular disease. I went for evp tests that showed vestibular neuropathy. Fearful of the LP, I insisted with the neuro I go to the cardio for vascular followup. I did well on the stress test, so when I finished with him I quit the cigarettes, and aggressively exercised and dieted like a fitness pro. The symptoms were less frequent. (I had only fatigue and episodes of depression, which I chalked up to "doing too much.") For actually a period of 4 or so months the odd symptoms seemed all but a thing of the past. Until 10/14/07, when nothing stopped most of them appearing all at once, without warning. That episode sparks a new fear of being debilitated at any moment. :[
Hi, I jump is as one of the so-called experts, lol. Remember that although I am a physician, I am no longer in practice and I was not a neurologist.
I have a couple comments. OCB is most helpful when it is postive which indicates there is immnunological inflammation occurring specifically in the central nervous system. Though 90% or so of people with MS will show OCB at some point in their disease, at presentation (first diagnosis) 25% or so will be negative. They used to do repeated LP's throughout the illness before they had the MRI to show disease progression. Many people now are diagnosed without an LP at all and few have more than one or two. It depends mostly, I think, on the neurologist's age and when he/she trained.
Benign MS. Many experts now discourage the use of that term, though you will still find it in the literature. The problem is that it can only be accurately called "benign" retrospectively, at the end of a person's life. Many people will have an initial course of a single attack -or two - and then nothing for many years up to a decade or a little more. We have several members here on the forum who have had this happen to them. I hope they speak up. During this time they are having a benign symptomatic course, but in some of them the damage is progressing bigtime. All of a sudden it "catches up to them" and they show up with significant disability. Since we had had the higher resolution MRI's we can see that many people with "benign" courses show progressive lesions and then atrophy which isn't symptomatic until later in life. There is still no way to assure a person that their course will remain benign. So far the best way to help it is early institution of one of the Disease Modifying Meds.
As far as life expectancy - that number is in rapid change. A century ago MS cut life expectancy in half. Even a few decades ago, it was felt to shorten life by as much as 20 years. Currently the number is a life expectancy of about 7 years less. But, you have to realize that people dying now, spent a great deal of their lives without the DMD's. Researchers expect that the life discrepancy will gradually disappear.
The term "Clinically Isolated Syndrome" refers to the person with just one attack of symptoms and findings suggestive of MS, but not enough to make a definite diagnosis. The right combination of exam findings (objective - more than just sensory symptoms which can't be verified) with postive test results can lead to the prediction of who has about an 80% chance of moving on to Definite MS. Those people are being started on a DMD in hopes of significantly delaying the appearance of full-blown MS.
Well, I've run on and on. I hope this has been helpful.
Quix
I have a couple comments. OCB is most helpful when it is postive which indicates there is immnunological inflammation occurring specifically in the central nervous system. Though 90% or so of people with MS will show OCB at some point in their disease, at presentation (first diagnosis) 25% or so will be negative. They used to do repeated LP's throughout the illness before they had the MRI to show disease progression. Many people now are diagnosed without an LP at all and few have more than one or two. It depends mostly, I think, on the neurologist's age and when he/she trained.
Benign MS. Many experts now discourage the use of that term, though you will still find it in the literature. The problem is that it can only be accurately called "benign" retrospectively, at the end of a person's life. Many people will have an initial course of a single attack -or two - and then nothing for many years up to a decade or a little more. We have several members here on the forum who have had this happen to them. I hope they speak up. During this time they are having a benign symptomatic course, but in some of them the damage is progressing bigtime. All of a sudden it "catches up to them" and they show up with significant disability. Since we had had the higher resolution MRI's we can see that many people with "benign" courses show progressive lesions and then atrophy which isn't symptomatic until later in life. There is still no way to assure a person that their course will remain benign. So far the best way to help it is early institution of one of the Disease Modifying Meds.
As far as life expectancy - that number is in rapid change. A century ago MS cut life expectancy in half. Even a few decades ago, it was felt to shorten life by as much as 20 years. Currently the number is a life expectancy of about 7 years less. But, you have to realize that people dying now, spent a great deal of their lives without the DMD's. Researchers expect that the life discrepancy will gradually disappear.
The term "Clinically Isolated Syndrome" refers to the person with just one attack of symptoms and findings suggestive of MS, but not enough to make a definite diagnosis. The right combination of exam findings (objective - more than just sensory symptoms which can't be verified) with postive test results can lead to the prediction of who has about an 80% chance of moving on to Definite MS. Those people are being started on a DMD in hopes of significantly delaying the appearance of full-blown MS.
Well, I've run on and on. I hope this has been helpful.
Quix
As to benign MS, I wonder if this really exists, over the long haul, I mean. Some people do have "clinically isolated " findings that don't warrant an MS diagnosis.
But for those with diagnosed MS who completely recover from attacks yet go on to suffer others, I don't see this as benign. Their attacks may be fierce, with totally debilitating symptoms. If they all finally remit, that's cause for rejoicing. But during the attacks the course is far from benign. Maybe "benign" refers to the relatively small percentage who do not eventually get secondary progressive disease.
Would much appreciate it if the experts here would jump in. That's sure not me.
ess
But for those with diagnosed MS who completely recover from attacks yet go on to suffer others, I don't see this as benign. Their attacks may be fierce, with totally debilitating symptoms. If they all finally remit, that's cause for rejoicing. But during the attacks the course is far from benign. Maybe "benign" refers to the relatively small percentage who do not eventually get secondary progressive disease.
Would much appreciate it if the experts here would jump in. That's sure not me.
ess
"....so how important is OCB's. If someone is OCB- is it still MS?...."
OCB = oligoclonal bands (inflammation in the CSF). If these bands are found in your spinal fluid it helps to confirm what your doctor may suspect. After ruling out other possibilities he would consider the results of your MRI's and your other symptoms, along with the OCB in your CSF and come up with the diagnosis of MS. Oligoclonal bands are typically found in people with Multiple Sclerosis. However, there are other diseases that present with OCB's in the spinal fluid. Sometimes with MS this banding does not show up immediately, or in some cases it doesn't show up for years.
Re: benign MS: Twenty percent of the MS population has a benign form of the disease in which symptoms show little or no progression after the initial attack; these patients remain fully functional. A few patients experience malignant MS, defined as a swift and relentless decline resulting in significant disability shortly after disease onset. However, MS is very rarely fatal and most people with MS have a fairly normal life expectancy.
OCB = oligoclonal bands (inflammation in the CSF). If these bands are found in your spinal fluid it helps to confirm what your doctor may suspect. After ruling out other possibilities he would consider the results of your MRI's and your other symptoms, along with the OCB in your CSF and come up with the diagnosis of MS. Oligoclonal bands are typically found in people with Multiple Sclerosis. However, there are other diseases that present with OCB's in the spinal fluid. Sometimes with MS this banding does not show up immediately, or in some cases it doesn't show up for years.
Re: benign MS: Twenty percent of the MS population has a benign form of the disease in which symptoms show little or no progression after the initial attack; these patients remain fully functional. A few patients experience malignant MS, defined as a swift and relentless decline resulting in significant disability shortly after disease onset. However, MS is very rarely fatal and most people with MS have a fairly normal life expectancy.
Hi there. There's nothing "beign" about the picture you present. There are many people out there with confirmed MS and a negative LP.
I don't know what your symptoms have been or what your neuro found in the course of his office exams and other tests, all of which are important, not just LP. But your MRI is the most important factor for you.
I'm sorry for your diagnosis but glad you will be starting on Avonex soon. Treatment is crucial. Please let us know ow things go, Chrissy.
ess
I don't know what your symptoms have been or what your neuro found in the course of his office exams and other tests, all of which are important, not just LP. But your MRI is the most important factor for you.
I'm sorry for your diagnosis but glad you will be starting on Avonex soon. Treatment is crucial. Please let us know ow things go, Chrissy.
ess
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