Aa
oligcolonal bands, and positive MRI, what next
in the Navy I had 3 spinal taps prior to surgery for herniated disks that returned the presence of high white cell count and oligcolonal bands. they decided not to due surgery due to bilateral conjoined nerve roots (so the papers state). honorable discharge due to back problems but they never diagnosed the spinal issue and called it false.
fast forward 22 years later ... the VA finally performed a spinal tap after all these years of physical complaints. if you know the VA you know they send you to shrinks when you have complaints that they can't or won't look into. i think some of us know how that works.
22 years later, the spinal tap still shows the presence of oligcolonal bands, two MRIs of the brain, one a "deep" scan and both of those radiologists state in their impression, "demyelinating disease".
and i have the typical symptoms, ear ringing, intestinal issues(the call these IBS), equilibrium issues, headaches, neck pain, shoulder pain, tingles in various places, right eye is sore/throbs and shoots to back of head. you know, the typical complaints.
and to this day the VA does not or will not give a diagnosis. i am waiting on a evoked potential test they want to do. but gee, is this normal to deny these tests and say "we don't know what you have"? they did the blood tests and i guess they came back normal.
so, any ideas as to what i might have? honestly, one cannot say there is nothing wrong here. even a laymen like me can see that and my body isn't lying to me.
tia
fast forward 22 years later ... the VA finally performed a spinal tap after all these years of physical complaints. if you know the VA you know they send you to shrinks when you have complaints that they can't or won't look into. i think some of us know how that works.
22 years later, the spinal tap still shows the presence of oligcolonal bands, two MRIs of the brain, one a "deep" scan and both of those radiologists state in their impression, "demyelinating disease".
and i have the typical symptoms, ear ringing, intestinal issues(the call these IBS), equilibrium issues, headaches, neck pain, shoulder pain, tingles in various places, right eye is sore/throbs and shoots to back of head. you know, the typical complaints.
and to this day the VA does not or will not give a diagnosis. i am waiting on a evoked potential test they want to do. but gee, is this normal to deny these tests and say "we don't know what you have"? they did the blood tests and i guess they came back normal.
so, any ideas as to what i might have? honestly, one cannot say there is nothing wrong here. even a laymen like me can see that and my body isn't lying to me.
tia
I'm sorry I never picked up on this answer. MS= Me Scatterbrained
You do have a lot of varied symptoms of the type we see in MS. I have some comments about some of them.
Years ago, the spinal tap that showed high white cells and O-Bands. This points more toward an infection or other kind of inflammation, than it does to MS. MS and elevated CSF white count do NOT go together. The O-Bands from infections can resolve as I mentioned above.
But, the O-Bands have been constant. That speaks to an ongoing inflammatory process, of which MS is the most common. Other diseases, though, do cause the production of O-Bands in the CSF.
The bowels can be affected in MS, and the problem is almost invariably constipation. Cramping can also occur, but rarely diarrhea. This could easily be dismissed as IBS.
On and off tightening of your stomach. What do you mean by "on and off"? How long do the episodes last and does it occur every day during the episodes?
Is the pain actually in the joint when you move it? Joint pain is not typical of MS, except where the associated muscle weakness places undue strain on the joints. MS doesn't have an inflammatory arthritis associated with it.
Cough with colds - not related to MS
You seem to describe a "jumpiness" or a kind of shivering or trembling - you called this an "anxious" feeling. Do you actually feel anxious and jumpy or is it just the physical feeling. Is your mind racing and worrying, too?
Cold sores not related to MS, except that a bout of cold sores can bring on a relapse afterward.
In talking about all of our symptoms it is much more useful to describe the episodes in terms of when a batch of symptoms starts and how long it (an episode) lasts. Like you say you have episodes of fatigue, but what is an episode - a really bad morning or a really bad month? You say you have most of these symptoms "on & off." That's just too nonspecifric to be helpful. Do you have them every day? Some of the way you describe your many symptoms is more suggestive of something like Lyme Disease. Have they sent the Western Blot for this or just the screnning test, called the ELISA? I would recommend repeat FULL testing for this.
MS can't be diagnosed from a list of symptoms, which is why almost anyone with some neuro symptoms will think they have MS after reading a list of the 1001 symptoms that can occur in the disease. It's the pattern of appearance/disappearance that gives the most clues.
Given your abnormal MRI, the positive O-Bands and your symptoms, someone should have been thinking hard about MS years ago.
You have got to get to an MS neurologist who is willing to THINK, do a thorough history and an even more thorough neuro exam. The VA appears to have totally, and possibly negligently, failed you
Yes, MS is totally on the table, but I'm not sure that it is the only possiblility.
Can you tell us if your symptoms come in episodes that last for more than a day at a time? Do any of the symptoms ever improve or go away?
Sorry, to keep asking more questions, but I still don't have a good sense of how the symptoms behave. It will also help you to tighten up how you discuss these symptoms with a neurologist. If you just list them as you have here (which is fine for here) they will get glassy eyed and start edging toward the door. If you can formulate a timeline that shows how they appeared---->stayed------>improved or stabilized------->new ones appeared, then the doctor will be able to evaluate them better.
Now if they all have appeared and then stayed, with never any clear beginning or end points, then that is very important for you and the neurologist to understand also. Does this make sense?
Keep trying and if I appear to overlook you, just nudge me. I'm as rattlebrained as everyone else here, lol.
Quix
You do have a lot of varied symptoms of the type we see in MS. I have some comments about some of them.
Years ago, the spinal tap that showed high white cells and O-Bands. This points more toward an infection or other kind of inflammation, than it does to MS. MS and elevated CSF white count do NOT go together. The O-Bands from infections can resolve as I mentioned above.
But, the O-Bands have been constant. That speaks to an ongoing inflammatory process, of which MS is the most common. Other diseases, though, do cause the production of O-Bands in the CSF.
The bowels can be affected in MS, and the problem is almost invariably constipation. Cramping can also occur, but rarely diarrhea. This could easily be dismissed as IBS.
On and off tightening of your stomach. What do you mean by "on and off"? How long do the episodes last and does it occur every day during the episodes?
Is the pain actually in the joint when you move it? Joint pain is not typical of MS, except where the associated muscle weakness places undue strain on the joints. MS doesn't have an inflammatory arthritis associated with it.
Cough with colds - not related to MS
You seem to describe a "jumpiness" or a kind of shivering or trembling - you called this an "anxious" feeling. Do you actually feel anxious and jumpy or is it just the physical feeling. Is your mind racing and worrying, too?
Cold sores not related to MS, except that a bout of cold sores can bring on a relapse afterward.
In talking about all of our symptoms it is much more useful to describe the episodes in terms of when a batch of symptoms starts and how long it (an episode) lasts. Like you say you have episodes of fatigue, but what is an episode - a really bad morning or a really bad month? You say you have most of these symptoms "on & off." That's just too nonspecifric to be helpful. Do you have them every day? Some of the way you describe your many symptoms is more suggestive of something like Lyme Disease. Have they sent the Western Blot for this or just the screnning test, called the ELISA? I would recommend repeat FULL testing for this.
MS can't be diagnosed from a list of symptoms, which is why almost anyone with some neuro symptoms will think they have MS after reading a list of the 1001 symptoms that can occur in the disease. It's the pattern of appearance/disappearance that gives the most clues.
Given your abnormal MRI, the positive O-Bands and your symptoms, someone should have been thinking hard about MS years ago.
You have got to get to an MS neurologist who is willing to THINK, do a thorough history and an even more thorough neuro exam. The VA appears to have totally, and possibly negligently, failed you
Yes, MS is totally on the table, but I'm not sure that it is the only possiblility.
Can you tell us if your symptoms come in episodes that last for more than a day at a time? Do any of the symptoms ever improve or go away?
Sorry, to keep asking more questions, but I still don't have a good sense of how the symptoms behave. It will also help you to tighten up how you discuss these symptoms with a neurologist. If you just list them as you have here (which is fine for here) they will get glassy eyed and start edging toward the door. If you can formulate a timeline that shows how they appeared---->stayed------>improved or stabilized------->new ones appeared, then the doctor will be able to evaluate them better.
Now if they all have appeared and then stayed, with never any clear beginning or end points, then that is very important for you and the neurologist to understand also. Does this make sense?
Keep trying and if I appear to overlook you, just nudge me. I'm as rattlebrained as everyone else here, lol.
Quix
Thanks for the welcome. Guess you can tell I'm new here as I'm writing a lot. Not many people to talk to about these type of things.
To clarify, the person who mentioned that about the bands is with a veteran's organization whom is supposed to help veterans with health claims at the VA, he is not with the VA.
Note that from what I have heard via my years in the VA system, is that when a veteran mounts a grievance claim, good luck on most of the doctors helping then. They will pay lip service but they know that the grievance has been placed. I would suspect their superiors have put some sort of unwritten gag order so to speak. And don't forget the doctor fraternity thing. Just the way it is there.
Also to clarify, the local VA neuro per my request for a second opinion has sent me to a MS VA clinic in another state. With my current test results I found it odd that the local neuro can't give me a diagnosis. He went on an on about this and that and this and subjective this and subject that. Said he would leave the diagnosis up to the other doctor. I still have the evoked tests to do.
Definitely my situation is that I have relapses and remissions mostly. As for weakness, it is hard to say but for the most part I would say that is limited to my right leg and hands sometimes. But not a terrible weakness. My right foot hits the floor at times when i though i had picked it up.
OK, you asked about symptoms, here goes me trying to list them:
over the years I’ve had these symptoms and most I still have on&off to this day:
--right eye that has dull throbbing pain shooting to back of head - current
--bowel issues - VA calls this IBS
--on and off tightening of my stomach area where it gets more difficult to breath - VA calls this stress
--after jarring my body, such as after running, jumping rope, etc, I'll have equilibrium problems accompanied with nausea and much fatigue. can last anywhere from a few days too a few weeks. I typically walk lightly due to this. No running for a long time now
--a bit uneasy with balance sometimes when walking. although not to the severity as after jarring my body as mentioned above
--bee buzzing feeling on bottom of right foot from time to time
--chronic pain in shoulders,neck,back, and some joints - VA calls these spasms
--terrible sleep patterns, can never get comfortable, tossing all the time as in an anxious sleep. usually my left eye stays mostly open. I cat nap usually
--acid reflux
--ringing in the ears
--find it difficult, i.e., more effort to talk at times, to find certain words in mid-sentence
--have episodes where my tongue feels like it is being swallowed, and where food has lost most of its taste
--have episodes where left side of cheek becomes tingling and a touch to it feels dull
--sometimes I can get a little disoriented. fatigue usually occurs at this time too
--have episodes of extreme fatigue, comes out of nowhere. then I'll have periods where I feel like really energetic and good but it doesn't last long or consistent
--colds with coughs take forever to go away
--body always seems a bit tight/anxious no matter what I do to alleviate this
--get hot and cold at times for no reason
--sometimes I drop things that I know I have a hold of, although this hasn't happened very much. enough that I have noticed it though.
--can't seem to keep my shoulders held back when standing up
--nervous for absolutely no reason at times. comes out of nowhere shoulders, joints and neck area shake at times, usually after a good exercise session
--the drip after I stop peeing. I stop, leave the restroom, then a little drip starts. blood pressure med for this has not stopped this
--left eye harder to close and keep closed when the right eye is closed
--I get a cold sore sometimes when I stress the body out -- exercise, heat, etc., probably nothing
--when sitting for long my spine in my lower-back then up to my brain has the sensation of getting a little numb. If I don't get up, I feel like I’m going to pass out. This is not the same thing as when falling asleep in a class or something. Totally different sensation to me. Sounds weird I know.
--heat bothers me as in direct sunlight and it can make me way more irritable than usual. I do like a steam session but I can take a cold shower right after. it my apt is hot the irritability level goes really high.
To clarify, the person who mentioned that about the bands is with a veteran's organization whom is supposed to help veterans with health claims at the VA, he is not with the VA.
Note that from what I have heard via my years in the VA system, is that when a veteran mounts a grievance claim, good luck on most of the doctors helping then. They will pay lip service but they know that the grievance has been placed. I would suspect their superiors have put some sort of unwritten gag order so to speak. And don't forget the doctor fraternity thing. Just the way it is there.
Also to clarify, the local VA neuro per my request for a second opinion has sent me to a MS VA clinic in another state. With my current test results I found it odd that the local neuro can't give me a diagnosis. He went on an on about this and that and this and subjective this and subject that. Said he would leave the diagnosis up to the other doctor. I still have the evoked tests to do.
Definitely my situation is that I have relapses and remissions mostly. As for weakness, it is hard to say but for the most part I would say that is limited to my right leg and hands sometimes. But not a terrible weakness. My right foot hits the floor at times when i though i had picked it up.
OK, you asked about symptoms, here goes me trying to list them:
over the years I’ve had these symptoms and most I still have on&off to this day:
--right eye that has dull throbbing pain shooting to back of head - current
--bowel issues - VA calls this IBS
--on and off tightening of my stomach area where it gets more difficult to breath - VA calls this stress
--after jarring my body, such as after running, jumping rope, etc, I'll have equilibrium problems accompanied with nausea and much fatigue. can last anywhere from a few days too a few weeks. I typically walk lightly due to this. No running for a long time now
--a bit uneasy with balance sometimes when walking. although not to the severity as after jarring my body as mentioned above
--bee buzzing feeling on bottom of right foot from time to time
--chronic pain in shoulders,neck,back, and some joints - VA calls these spasms
--terrible sleep patterns, can never get comfortable, tossing all the time as in an anxious sleep. usually my left eye stays mostly open. I cat nap usually
--acid reflux
--ringing in the ears
--find it difficult, i.e., more effort to talk at times, to find certain words in mid-sentence
--have episodes where my tongue feels like it is being swallowed, and where food has lost most of its taste
--have episodes where left side of cheek becomes tingling and a touch to it feels dull
--sometimes I can get a little disoriented. fatigue usually occurs at this time too
--have episodes of extreme fatigue, comes out of nowhere. then I'll have periods where I feel like really energetic and good but it doesn't last long or consistent
--colds with coughs take forever to go away
--body always seems a bit tight/anxious no matter what I do to alleviate this
--get hot and cold at times for no reason
--sometimes I drop things that I know I have a hold of, although this hasn't happened very much. enough that I have noticed it though.
--can't seem to keep my shoulders held back when standing up
--nervous for absolutely no reason at times. comes out of nowhere shoulders, joints and neck area shake at times, usually after a good exercise session
--the drip after I stop peeing. I stop, leave the restroom, then a little drip starts. blood pressure med for this has not stopped this
--left eye harder to close and keep closed when the right eye is closed
--I get a cold sore sometimes when I stress the body out -- exercise, heat, etc., probably nothing
--when sitting for long my spine in my lower-back then up to my brain has the sensation of getting a little numb. If I don't get up, I feel like I’m going to pass out. This is not the same thing as when falling asleep in a class or something. Totally different sensation to me. Sounds weird I know.
--heat bothers me as in direct sunlight and it can make me way more irritable than usual. I do like a steam session but I can take a cold shower right after. it my apt is hot the irritability level goes really high.
Yep! Me Frustrated, too!
Hi, we haven't spoken yet. Welcome to the forum.
It pains me to see the shabby way some of our VA centers operate. I have seen better ones, but it is a national disgrace.
I'm curious about the symptoms you have had for the last 22 years. Have they come in relapses and remissions or have they been constant? Do you have weakness? I know about the pain and dizziness, but can you tell us more about what the symptoms are and how they act?
If you have years of symptoms that are consistent with demyelinating disease and an abnormal exam, then an MRI that is consistent with demyelinating disease also would essentially be all you need for a diagnosis. The positive LP showing O-Bands is just icing. If they are withholding a diagnosis, then they have deprived you of time that could have been been protecting you from the progression of this disease. It is completely clear and proven that MS (if that is what you have) is best treated with a Disease Modifying Drug early. the drugs are more effective, the earlier in the disease they are given.
What you have been told here about O-Bands is correct. Within the context of MS, O-Bands are progressively acquired during the course of the disease and they do not go away. A sinlge O-Band due to an infection that heals might resolve. I think I read that, but in MS, all they do is accumulate. Whoever told you different at the VA was talking through his ear.
I believe that you need to mount a grievance - if that is possible - and demand to be sent to one of the VA's MS clinics for evaluation. The way you have been treated is criminal!
Please tell us more about the way your symptoms have acted.
Welcome again,
Quix
Hi, we haven't spoken yet. Welcome to the forum.
It pains me to see the shabby way some of our VA centers operate. I have seen better ones, but it is a national disgrace.
I'm curious about the symptoms you have had for the last 22 years. Have they come in relapses and remissions or have they been constant? Do you have weakness? I know about the pain and dizziness, but can you tell us more about what the symptoms are and how they act?
If you have years of symptoms that are consistent with demyelinating disease and an abnormal exam, then an MRI that is consistent with demyelinating disease also would essentially be all you need for a diagnosis. The positive LP showing O-Bands is just icing. If they are withholding a diagnosis, then they have deprived you of time that could have been been protecting you from the progression of this disease. It is completely clear and proven that MS (if that is what you have) is best treated with a Disease Modifying Drug early. the drugs are more effective, the earlier in the disease they are given.
What you have been told here about O-Bands is correct. Within the context of MS, O-Bands are progressively acquired during the course of the disease and they do not go away. A sinlge O-Band due to an infection that heals might resolve. I think I read that, but in MS, all they do is accumulate. Whoever told you different at the VA was talking through his ear.
I believe that you need to mount a grievance - if that is possible - and demand to be sent to one of the VA's MS clinics for evaluation. The way you have been treated is criminal!
Please tell us more about the way your symptoms have acted.
Welcome again,
Quix
Why don't you post your last as a new post. You will probably get more responses. Just a thought. I will answer over there.
terry
terry
have your symptoms made you a "loner"? that is to ask, over the years i have steadily decreased social commitments due to i never know how i will feel from day to day. it used to be like, week to week, now, more of a day to day thing. days of feeling well, (normal i would say) are not consistent at all. edgy pain & fatigue comes and goes like the wind.
just curious, that from a social point of view, my situation has been turned upside down and from a survivor point of view, i'm more of a loner now and rarely commit to social engagements.
just curious, that from a social point of view, my situation has been turned upside down and from a survivor point of view, i'm more of a loner now and rarely commit to social engagements.
>>O-bands, once you have them, never go away. There are only a few diseases that show as o-bands, and MS is one of them.
Hi Lulu,
you mention that the O-bands never go away. is that true? i ask due to a rep from a veteran's office here stated to me when I presented my paperwork that O-bands come and go. and that having them doesn't mean much. go figure that one.
in my case, they first appeared 22 years ago, and they are still there according to a tap done last Fall.
Hi Lulu,
you mention that the O-bands never go away. is that true? i ask due to a rep from a veteran's office here stated to me when I presented my paperwork that O-bands come and go. and that having them doesn't mean much. go figure that one.
in my case, they first appeared 22 years ago, and they are still there according to a tap done last Fall.
Lulu, give up? not likely. 22 years and still trudging uphill and hopefully help a few others on the way.
PastorDan, i can and have requested other doctors at the VA. that isn't a big deal, just some small paperwork and will do so with the local neuro. they fly me to another state for another neuro clinic. cannot get away from Uncle Sam for now as I'm not working currently. when I was at my last job, even the civilian doctors wouldn't follow up on a spinal tap saying there wasn't a reason to do so, just like the VA in that state said. I moved from that state 2 years ago thinking the weather and job market would be better for me here. that didn't work out well. ;-)
if all the same, i prefer for now, not to say where i'm at as i'm sure some VA doctors read this list from time to time and my trust in them isn't in high confidence. those test results are true & i have the paper to show it - so when i have that and VA doctors say there isn't anything wrong and/or we can't give a diagnosis - my trust in them is a bit lacking.
looks like others on this list share my thoughts too. on one side this is comforting, on the other, it is a sad state.
PastorDan, i can and have requested other doctors at the VA. that isn't a big deal, just some small paperwork and will do so with the local neuro. they fly me to another state for another neuro clinic. cannot get away from Uncle Sam for now as I'm not working currently. when I was at my last job, even the civilian doctors wouldn't follow up on a spinal tap saying there wasn't a reason to do so, just like the VA in that state said. I moved from that state 2 years ago thinking the weather and job market would be better for me here. that didn't work out well. ;-)
if all the same, i prefer for now, not to say where i'm at as i'm sure some VA doctors read this list from time to time and my trust in them isn't in high confidence. those test results are true & i have the paper to show it - so when i have that and VA doctors say there isn't anything wrong and/or we can't give a diagnosis - my trust in them is a bit lacking.
looks like others on this list share my thoughts too. on one side this is comforting, on the other, it is a sad state.
I guess it wouldn't help if I said I dumped my first neurologist last week, but it would be consistent with many others who have posted here. Whether you can get away from Uncle Sam's health care system and into one run by people who are interested in doing something is another issue, as Lulu noted above. Regardless, you have found a site jam packed with information, and with people who are facing a lot of the same things that face you today. Stick around & share as you're able; you'll find this group worth your while. By the way, welcome aboard. Where's home?
The VA is notoriously hesitant to get involved with diagnosing anything that requires ongoing treatment, let alone expensive treatment. We have another member, Dennis (sailorsong, I believe) that is also navigating the VA with mixed success. I am so sorry you have been treated this way.
O-bands, once you have them, never go away. There are only a few diseases that show as o-bands, and MS is one of them.
Lesions on the brain can be caused by a number of things. But it sounds like the radiologist who read your films saw a pattern suggestive of MS as well.
If you put the o-bands, mri and all your symptoms together, it sounds like a very convincing case in favor of MS. That would stink but it could always be worse.
Now how do we get you to a neurologist who is knowledgeable about MS and not these wahoos you have been seen by so far? Do you have the option of being referred to a private physician or must you stay in the VA system?
Don't give up on getting some answers,
Lulu
O-bands, once you have them, never go away. There are only a few diseases that show as o-bands, and MS is one of them.
Lesions on the brain can be caused by a number of things. But it sounds like the radiologist who read your films saw a pattern suggestive of MS as well.
If you put the o-bands, mri and all your symptoms together, it sounds like a very convincing case in favor of MS. That would stink but it could always be worse.
Now how do we get you to a neurologist who is knowledgeable about MS and not these wahoos you have been seen by so far? Do you have the option of being referred to a private physician or must you stay in the VA system?
Don't give up on getting some answers,
Lulu
ok Terry. this is my first time going outside the VA to ask questions and tell my story about this. after 22 years it is probably about time.
i do look forward to seeing what others say versus my thought patterns of being frustrated talking to neuro's. some of these doctors are the strangest people i have ever listened too. and i mean that with due respect, but whoa!, can they really feel good about themselves at night knowing they just spoke a wad of BS to their patient(s)?
any hoot, got plenty of coffee and will check back periodically.
i do look forward to seeing what others say versus my thought patterns of being frustrated talking to neuro's. some of these doctors are the strangest people i have ever listened too. and i mean that with due respect, but whoa!, can they really feel good about themselves at night knowing they just spoke a wad of BS to their patient(s)?
any hoot, got plenty of coffee and will check back periodically.
We have a "wennie" roast of our neuros every Friday night so you are right on schedule...lol
Now to be serious there are so many horror stories our members have shared about trying to get a dx you wouldn't believe it.
It does not seem to be that uncommon for ppl to go years without getting dx even though it is very clear something is wrong. I have a dx of demylinating disease but no MS dx so I can't start meds. I guess my brain will just continue to deteriorate.
I am sure others will be stopping by to share their stories. It could turn out to be a long post so get your coffee or whatever you drink and settle in. As soon as ppl start logging on for the night you will get some responses.
terry
Now to be serious there are so many horror stories our members have shared about trying to get a dx you wouldn't believe it.
It does not seem to be that uncommon for ppl to go years without getting dx even though it is very clear something is wrong. I have a dx of demylinating disease but no MS dx so I can't start meds. I guess my brain will just continue to deteriorate.
I am sure others will be stopping by to share their stories. It could turn out to be a long post so get your coffee or whatever you drink and settle in. As soon as ppl start logging on for the night you will get some responses.
terry
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