Aa
Can you have MS without oligoclonal banding
After 17 years of mild yet increasing joint pain, lack of balance, difficulty concentrating, digestive problems, bowel problems and a bout of shingles, last November all of my symptoms were suddenly (and graphically!) magnified by about 100, along with a horrible headache that ranged from vice like pain to stabbing pain always around my eyes, especially in my right eye. My vertigo was so bad that I couldn't sit up without supporting my head to make me feel grounded. After months of my GP treating me for stress, he finally sent me for an MRI which came back abnormal. He told me I had MS and sent me to a neurologist.
Now the neurologist thinks I don't have MS because my LP was negative for oligoclonnal banding or ANA. My MRI says I have "periventricular white matter in bifrontal horn region" and "multifocal patchy spotting otherwise noted in the bilateral hemispheres" The neuro says the spots aren't large and could be regular aging. I'm only 34. I didn't think old age would hit yet. . .
Does anybody know how significant oligoclonal banding is to MS? Would I have it when if I were in remission? After three months I feel much better. Just really tired now. I'm taking five different things which seem to control my pain. A round of prednisone, then antibiotics seemed to take away most of my pain, although the side effects were pretty scary.
Thanks for any info. I'm just feeling even more in limbo than when this started. Well. . . better limbo than vertigo.
Now the neurologist thinks I don't have MS because my LP was negative for oligoclonnal banding or ANA. My MRI says I have "periventricular white matter in bifrontal horn region" and "multifocal patchy spotting otherwise noted in the bilateral hemispheres" The neuro says the spots aren't large and could be regular aging. I'm only 34. I didn't think old age would hit yet. . .
Does anybody know how significant oligoclonal banding is to MS? Would I have it when if I were in remission? After three months I feel much better. Just really tired now. I'm taking five different things which seem to control my pain. A round of prednisone, then antibiotics seemed to take away most of my pain, although the side effects were pretty scary.
Thanks for any info. I'm just feeling even more in limbo than when this started. Well. . . better limbo than vertigo.
I am now 30 yrs old. # years ago I presented with so many crazy wakey symptoms I thought my brain was broken, and I was going blind. I had optical nueritis that is now can. I was so dizzy with abnormal nystagus on the horizontal plane. My MRI was fine. Within a month I was found to be pregnant and slowly over that summer my symptoms resolved in about 4 months. They attempted an LP (some residents) and I had such a panic attack it had to stop. I was ordered brain, throacic, and lumbar MRI's all with contrast but denied it because of my pregnancy. I put myslef into a place of denial after that. Since then I have been dealing with sensory disturbances coming and going. The mainstay is the fatigue, occasional nystagmus (expecially when tracking), poor balance, intermittent tingling in my ankles, and times when I jumble my words up. I also do things like bump into doorways. Now, I am ready to go back to the doc. I plan on going through the work-up but now I am worried that if my MRIs are clean, and the LP is negative, then what? The only thing was that that first MRI said the same thing (from original post) about the white matter but that it was on the occipital horn. no one ever told me what that meant. Was that a lesion? Cause he told me it was nothing in a quiet mumble as he was reading the report. Also, I had evoked potentials hooked up to the posterior on my lower legs and was told that it was slightly slower on my right side but only by "a fraction" and so that it also was probably nothing.
But now, the reason I am going back is because in afternoon, when i become the most tired at about 4:00, I have a 30 mile drive home on the highway. ANd these last 2 weeks it has been increasingly hard to track the road and other vehicles. My eyes do their "mind of their own" thing and it is so hard to keep control of them so I can drive. During these same 2 weeks I had increase in brain fog - forgetting what I was doing/saying - and bumping into things and the tingles got a little more intense. And now today its like nothing is going on.
So, if my MRI is still clean, and I have no banding, should I still be looking at MS for a few more years, waiting to see if really is happening to me?
But now, the reason I am going back is because in afternoon, when i become the most tired at about 4:00, I have a 30 mile drive home on the highway. ANd these last 2 weeks it has been increasingly hard to track the road and other vehicles. My eyes do their "mind of their own" thing and it is so hard to keep control of them so I can drive. During these same 2 weeks I had increase in brain fog - forgetting what I was doing/saying - and bumping into things and the tingles got a little more intense. And now today its like nothing is going on.
So, if my MRI is still clean, and I have no banding, should I still be looking at MS for a few more years, waiting to see if really is happening to me?
I will be blunt here. Oh, Welcome to the forum! I hope you find a good source of info and a great source of support here. I am a retired physician with MS who hangs out here trying to help clarify some of the science, but I was not a neurologist. I try, but I may well be wrong some of the time.
You need a new neurologist!!! You current doctor has taken some information, misinterpreted it and made new rules for it that are not followed by neurologists of good intelligence and diligence.
First - Yes, you can have MS and have no or normal O-Bands on CSF. Most people have O-Bands on their LP, but early in the disease it is more likely that they may be negative. I don't mean the majority of them will be negative, but that is time when someone is more likely to be negative.
Your doctor read a study from a few years (2003) ago that claimed to have found 100% of MS patients have oligoclonal bands. That study was different from your situation in several ways.
First - that sudy was repeated and they found 95% had O-Bands. So 1 in 20 did no.
That study was introducing a new and better method for testing for O-Bands. And it is indeed better. But, all of the testing was done under highly rigorous standards. The lab equipment was ideal, the technique used was the same each time, and the technicians were highly trained to run and to interpret the results. The results are subject to interpretation. So every specimen was run under ideal conditions. And the subjects were people who already were know to have MS! It did not determine how accurate that test is for diagnosis early after the onset of symptoms!
But a lot of neurologists just saw "100% of MS have O-Bands" and ran with it making it their new rule.
IT IS NOT A RULE FOR DIAGNOSIS!!!! The accepted criteria for diagnosis do not ANYWHERE state that the LP must me positive for a diagnosis of Definite MS. Period. The presence of O-Bands can be used to help make the diagnosis, but it is not a criterion of exclusion. You cannot exclude the diagnosis of MS if the O-Bands are negative.
It is not clear that the new technique for testing for the O-Bands are in universal use! In my experience labs do not change techniques until forced to by the requesting doctors. And how do we know that the test was run under the perfect conditions that would be used by the research study? The techs must be trained!
We have heard this "rule" before. I respect my MS neuro immensely. I had an atypical history and a lousy MRI (only one brain lesion) but a great exam for MS and all the mimics were ruled out. My O-Bands were technically negative (I only had 1). But, my doc still called MS.
Second. This is absolute Horsefeathers that you have a brain full of lesions from aging at 34 years!!!!! When they studied age-related white matter lesions, they found that the very rare person might have one or two by the mid-20's, they were occasionally seen in the early 30's (always few in number), but didn't begin to become more prominent until the 40's. Many people don't even have them in their fifties. They aren't a sure thing. Everbody doesn't get them.
Then there is the totally ridiculous thinking that goes like this - "This person comes in with complaints suggestive of neurologic disease. I think I will do an MRI to look for brain lesions. OH! The MRI shows lots of lesions. Just what I was looking for! But, somewhere I read that even young adults can have lesions normally. What were those numbers?? Well, I really don't want to get into all this, so I'll just write off those lesions (uh, the ones I was looking for in the first place) and blame them on her age. 34? She won't know the difference!"
It is true that some people with decades of untreated high blood pressure or decades of migraines can have small white matter lesions, but I assume that is not happening to you.
You need a neurologist who is capable of incorporating what he reads accurately and not running with every result that comes by. You need someone else!! You need a good workup for MS and the things that mimic MS. I would recommend an MS Specialist.
If you indeed have MS, the Disease Modifying Drugs work far better early in the disease than several years later. It is worth a little doctor shopping to get a real diagnosis based on real science and not some quacks "pet personal rules."
We hear what you have told us far too often. Stay here and we will try to help you get out of the He$$ that is Limboland. It's line trying to survice on the Dark Side of the Moon. With a diagnosis you can move forward. Without one you can't.
Welcome again,
Quix
You need a new neurologist!!! You current doctor has taken some information, misinterpreted it and made new rules for it that are not followed by neurologists of good intelligence and diligence.
First - Yes, you can have MS and have no or normal O-Bands on CSF. Most people have O-Bands on their LP, but early in the disease it is more likely that they may be negative. I don't mean the majority of them will be negative, but that is time when someone is more likely to be negative.
Your doctor read a study from a few years (2003) ago that claimed to have found 100% of MS patients have oligoclonal bands. That study was different from your situation in several ways.
First - that sudy was repeated and they found 95% had O-Bands. So 1 in 20 did no.
That study was introducing a new and better method for testing for O-Bands. And it is indeed better. But, all of the testing was done under highly rigorous standards. The lab equipment was ideal, the technique used was the same each time, and the technicians were highly trained to run and to interpret the results. The results are subject to interpretation. So every specimen was run under ideal conditions. And the subjects were people who already were know to have MS! It did not determine how accurate that test is for diagnosis early after the onset of symptoms!
But a lot of neurologists just saw "100% of MS have O-Bands" and ran with it making it their new rule.
IT IS NOT A RULE FOR DIAGNOSIS!!!! The accepted criteria for diagnosis do not ANYWHERE state that the LP must me positive for a diagnosis of Definite MS. Period. The presence of O-Bands can be used to help make the diagnosis, but it is not a criterion of exclusion. You cannot exclude the diagnosis of MS if the O-Bands are negative.
It is not clear that the new technique for testing for the O-Bands are in universal use! In my experience labs do not change techniques until forced to by the requesting doctors. And how do we know that the test was run under the perfect conditions that would be used by the research study? The techs must be trained!
We have heard this "rule" before. I respect my MS neuro immensely. I had an atypical history and a lousy MRI (only one brain lesion) but a great exam for MS and all the mimics were ruled out. My O-Bands were technically negative (I only had 1). But, my doc still called MS.
Second. This is absolute Horsefeathers that you have a brain full of lesions from aging at 34 years!!!!! When they studied age-related white matter lesions, they found that the very rare person might have one or two by the mid-20's, they were occasionally seen in the early 30's (always few in number), but didn't begin to become more prominent until the 40's. Many people don't even have them in their fifties. They aren't a sure thing. Everbody doesn't get them.
Then there is the totally ridiculous thinking that goes like this - "This person comes in with complaints suggestive of neurologic disease. I think I will do an MRI to look for brain lesions. OH! The MRI shows lots of lesions. Just what I was looking for! But, somewhere I read that even young adults can have lesions normally. What were those numbers?? Well, I really don't want to get into all this, so I'll just write off those lesions (uh, the ones I was looking for in the first place) and blame them on her age. 34? She won't know the difference!"
It is true that some people with decades of untreated high blood pressure or decades of migraines can have small white matter lesions, but I assume that is not happening to you.
You need a neurologist who is capable of incorporating what he reads accurately and not running with every result that comes by. You need someone else!! You need a good workup for MS and the things that mimic MS. I would recommend an MS Specialist.
If you indeed have MS, the Disease Modifying Drugs work far better early in the disease than several years later. It is worth a little doctor shopping to get a real diagnosis based on real science and not some quacks "pet personal rules."
We hear what you have told us far too often. Stay here and we will try to help you get out of the He$$ that is Limboland. It's line trying to survice on the Dark Side of the Moon. With a diagnosis you can move forward. Without one you can't.
Welcome again,
Quix
1 Comments
How do you find a new neurologist that won't let the first one cloud their opinion? I have had 2 lps with no o bands present. I have numeral lesions with radiologist stating ms is probable. Along with a lesion on cervical spine. Neurologist thinks it's scar tissue due to neck surgery radiologist says it's not scar tissue. I'm 55 and had symptoms for at least the last 15years but I ignored them. My neurologist wants me to just accept I have brain lessions for no reason that can be found.
There are cases where 20 and 30 years go by, but those are usually in children that are diagnosed with ADEM. I did a little research, but couldn't find anything specific other than a small percentage of people who have been diagnosed with ADEM eventually have their diagnosis changed to MS because of repeated attacks. I've had clients with this, and the deficits can be there forever depending on the area especially where the optic nerves are concerned.
As far as the flare-ups vs. residual effects from ADEM...with the patients I've worked with that had ADEM, they went from being pretty healthy to having this illness and having deficits due to the damage done. One had ON, but didn't recover her sight. One had left-sided paralysis that improved a little but not much. They didn't seem to have up days and down days. It was more like dealing with brain damage if I had to compare it to something. What I experience is not like that. There are good days and bad days. Fatigue is almost always an issue. When I have a flare, I feel bad - tired, incoherent. When they were having a 'bad day' it was just that they weren't dealing with the deficit very well. I hope I'm making some sense, but please let me know if you want me to go into further detail.
TC
As far as the flare-ups vs. residual effects from ADEM...with the patients I've worked with that had ADEM, they went from being pretty healthy to having this illness and having deficits due to the damage done. One had ON, but didn't recover her sight. One had left-sided paralysis that improved a little but not much. They didn't seem to have up days and down days. It was more like dealing with brain damage if I had to compare it to something. What I experience is not like that. There are good days and bad days. Fatigue is almost always an issue. When I have a flare, I feel bad - tired, incoherent. When they were having a 'bad day' it was just that they weren't dealing with the deficit very well. I hope I'm making some sense, but please let me know if you want me to go into further detail.
TC
Thanks for the information, it is very similar to what I have read over the past two years. I had all of the above presenting symptoms except for coma, although I did have very sevier alterations on conciousness. I was in a very dilusional confusing state of mind at presentation that lasted for two weeks. I could not think, hold a thought pattern or keep up with a conversation. It felt as though I was slipping out of my concious mind. Thankfully it did not progress to coma. I had sevier mental status changes . I aso beleive I had bilateral Retoubular neuritis. The neuro- opthalmologist said it was further back toward my brain. Because the first hospitals and opthalmologist thought this was phsyciatric instead of medical because my eye exams were completely normal and my VA was 20/20, I did not get sent to a neurologist until six months after the onset and I did not receive any steriods or any treatment to take down the inflamation. I do have vision deficeits and a lot of nerve damage. My lesions were all of the same age according to my neuro and since I had never had a previous MRI ther was none to compare it to. But two years later and repeat MRI's every six months since then have showed not new lesions and no change in the origional lesions and no enhanceing lesions. So this is why I haven't been diagnosed with MS and still have a dx of ADEM. My question is that how long could it go without another attack or more lesions show up before MS can be ruled out? And the defeceits that I still have bouts with how do I tell them from flares? They seem to be the ones that was here from the onset.
Santana8
Santana8
Sorry you're having so much trouble. I can help with a couple of things.
ADEM is Acute Disseminated Encephalomyelitis. It's more common in children and typically follows some sort of infection (bacterial or viral) or vaccinations. It presents similar to encephalitis (no matter the cause) with fever, headache, stiff neck, vomiting, and lethargy. This is followed by altered states of consciousness, delusions, or even coma. Apparently, the prognosis corresponds to the level of consciousness. Patients also have neurological deficits which can include bilateral optic neuritis, ataxia, paralysis, clumsiness, and seizures. It can be fatal and those cases progress rapidly over a few days. Other not so serious cases can last 2-4 weeks and this illness is just that - an illness. It's a one-time event. BUT, it can have lasting neurological events and some people 'develop' MS years later.
Tests that are used to diagnose it are EEG, MRI, and LP - all of which usually show some abnormalities. Lesions associated with ADEM will typically show as white matter lesions. These are caused by infiltration from WBCs around small veins. The demyelination occurs at this area and is limited. These are difficult to distinguish from MS lesions using MRI, but are very distinct when seen in the brain (through autopsy or biopsy). If a patient has several lesions that appear to be the same age with no enhancements, no other lesions, and no flares, ADEM is more likely apparently. The CSF will show an increase in white blood cells and protein. I don't remember if the CSF will return to normal after the illness - I'll have to look that one up. The EEG is usually abnormal showing widespread slowing.
Distinguishing between ADEM and acute MS is very difficult. Apparently most docs rely on the fact that lesions (supposedly) appear in MS patients BEFORE they show symptoms, but in my humble experience, I'd say about 50% of the MSers I know have symptoms before they show lesions on MRI. I'm one of them. I think the assumption is that an MRI will pick up all lesions, and that simply isn't the case. So, if someone presents with the symptoms of ADEM and no 'old' lesions, a doctor might diagnose ADEM. If old lesions are present, MS is more likely. Again, patients that truly have ADEM don't continue to have episodes or flare-ups. They may have problems related to the damage like blindness, balance problems, or numbness, but these are life-long issues.
I'm not sure about the chronic neuroinflammation. I know neuroinflammation is association with Alzheimer's but with regards to how the nerve cells are destroyed in the latter part of the disease. This one warrants some investigation.
IV Solu-medrol and/or immunoglobulins are the drugs of choice and greatly reduce the inflammation and stop the immune process in ADEM.
I did look up the age-related issue, and it was noted in several articles that people who were part of various studies not related to MS that required an MRI sometimes showed small areas that could be lesions with no associated symptoms. These were mostly in older people (over 55) and were attributed to the aging process.
Hope this helps!
TC
ADEM is Acute Disseminated Encephalomyelitis. It's more common in children and typically follows some sort of infection (bacterial or viral) or vaccinations. It presents similar to encephalitis (no matter the cause) with fever, headache, stiff neck, vomiting, and lethargy. This is followed by altered states of consciousness, delusions, or even coma. Apparently, the prognosis corresponds to the level of consciousness. Patients also have neurological deficits which can include bilateral optic neuritis, ataxia, paralysis, clumsiness, and seizures. It can be fatal and those cases progress rapidly over a few days. Other not so serious cases can last 2-4 weeks and this illness is just that - an illness. It's a one-time event. BUT, it can have lasting neurological events and some people 'develop' MS years later.
Tests that are used to diagnose it are EEG, MRI, and LP - all of which usually show some abnormalities. Lesions associated with ADEM will typically show as white matter lesions. These are caused by infiltration from WBCs around small veins. The demyelination occurs at this area and is limited. These are difficult to distinguish from MS lesions using MRI, but are very distinct when seen in the brain (through autopsy or biopsy). If a patient has several lesions that appear to be the same age with no enhancements, no other lesions, and no flares, ADEM is more likely apparently. The CSF will show an increase in white blood cells and protein. I don't remember if the CSF will return to normal after the illness - I'll have to look that one up. The EEG is usually abnormal showing widespread slowing.
Distinguishing between ADEM and acute MS is very difficult. Apparently most docs rely on the fact that lesions (supposedly) appear in MS patients BEFORE they show symptoms, but in my humble experience, I'd say about 50% of the MSers I know have symptoms before they show lesions on MRI. I'm one of them. I think the assumption is that an MRI will pick up all lesions, and that simply isn't the case. So, if someone presents with the symptoms of ADEM and no 'old' lesions, a doctor might diagnose ADEM. If old lesions are present, MS is more likely. Again, patients that truly have ADEM don't continue to have episodes or flare-ups. They may have problems related to the damage like blindness, balance problems, or numbness, but these are life-long issues.
I'm not sure about the chronic neuroinflammation. I know neuroinflammation is association with Alzheimer's but with regards to how the nerve cells are destroyed in the latter part of the disease. This one warrants some investigation.
IV Solu-medrol and/or immunoglobulins are the drugs of choice and greatly reduce the inflammation and stop the immune process in ADEM.
I did look up the age-related issue, and it was noted in several articles that people who were part of various studies not related to MS that required an MRI sometimes showed small areas that could be lesions with no associated symptoms. These were mostly in older people (over 55) and were attributed to the aging process.
Hope this helps!
TC
After three years of classic MS symptoms, massive (and I mean massive) migraines, and the brain lesion patterns that annamarie noted above, my neuro finally ruled out MS after an LP this January showed no banding, just slightly elevated protein levels. His diagnosis is 'chronic low-grade inflammation of the brain'. This really makes no sense to me since I have distinct flares. I tried to get another opinion, but no neuro in my area will even look at me since the neuro who diagnosed me is regarded as one of the top MS specialists in the large metro area I live in (Dallas-Fort Worth). Have any of you heard of this 'chronic neuro-inflammation'? Also, what does ADEM stand for? Thanks so much for any replies. I was ok with all of this until I had an 'episode' last night that sure felt like a seizure to me.
I also had a positive MRI and a negative LP. I have been stuck between two dx's for two years now. ADEM and MS. I also had eye pain and a visual field defect. my six repeat MRI's done every six months for the last two years have showed no new lesions and no enhancement of lesions. All of the origional lesions which my neuro says look the same age indicating they all happened at the same time , are still there with no change.He is leaning toward the ADEM dx because of no new lesions or no new attacks in two years. And also because my LP was negative and showed no O banding. He said if I have one more new lesion show up on MRI or have another attack then he will dx me wirth MS. I don't know either what it means to have a negative LP and a positive MRI. Quix explained it to me the best she could, but I am still a little confused about this. One thing you mentioned that you were on prednisone for this. I have read that if your eye pain was caused by ON then oral prednisone is not recommened. Something about recurrent attacks. You might want to look this up.
1 Comments
SAME HERE. Two diagnosis ADEM and MS.
Hi there and welcome, if you are new. This is a great place to be.
Based on what you've written, I'll be very blunt. You need a new neuro! MS is quite possible with a normal LP. It happens all the time. The results of LP are not likely to change because one is in remission. If you have had O bands you will continue to have them, but this isn't definitive at all in diagnosisng MS.
Also, 34 is way, way too young to be talking about the effects of aging on MRIs. That makes no sense at all.
Some of the symptoms you descirbe are characteristic of MS but not all. Nevertheless, 17 years is way too long to go without a good diagnosis. Valuable time is elapsing, during which you could suffer serious deficits. Please find a neuro who specializes in MS, to rule it in or out without delay.
We'll be here to help.
ess
Based on what you've written, I'll be very blunt. You need a new neuro! MS is quite possible with a normal LP. It happens all the time. The results of LP are not likely to change because one is in remission. If you have had O bands you will continue to have them, but this isn't definitive at all in diagnosisng MS.
Also, 34 is way, way too young to be talking about the effects of aging on MRIs. That makes no sense at all.
Some of the symptoms you descirbe are characteristic of MS but not all. Nevertheless, 17 years is way too long to go without a good diagnosis. Valuable time is elapsing, during which you could suffer serious deficits. Please find a neuro who specializes in MS, to rule it in or out without delay.
We'll be here to help.
ess
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