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Do I have a Positive LP tap for MS
HI, I am new to this. A little history first....I am 45 years old and had a bout of optic neuritis back in November that lasted until March. I have a baby sister that has MS and has had it for about 7 years. Due to all these factors I went to a Neurologist and finally agreed to a spinal tap.My first MRI showed nothing but some white matter and a growth on my thyroid. My spinal tap results however showed that I had 12 O-glands, lymphs,CSF wer 100 and my ms protein was 8. The neurologist I am seeing is saying because I had no lesions on my first MRI that she will not give me definitive diagnosis of MS, basically she is saying no I don't have MS and she is not looking for anything else. All this stuff is high but she is not looking at any other possibilities. My B12 test came back at 212 and she said it was very low and did put me on B12 complex for a month and if that does not raise it I will have to go on some kind of shots. And that is all she is saying. I am stressed to the max with the not knowing and maybe it is or maybe it isn'ts. Please help explain all this in english so I can understand it. Thanks for your help.
Hang in there
It should NOT have been difficult to get a copy of your doctor's reports. You have a right to those, you may have to sign some papers, but you are entitled to keep a copy of his dictated notes. I do because I travel and if I have problems, it really helps whomever I go see. Also keep a copy of your MRI discs and CT discs.
Hang in there, not to discourage you but my first s/s and flare was in 1981 and I wasn't dx until 2011. Neurologists can be a pain and sometimes you have to weed thru them til you find a good one!
You've gotten some good advice here from some great people
It should NOT have been difficult to get a copy of your doctor's reports. You have a right to those, you may have to sign some papers, but you are entitled to keep a copy of his dictated notes. I do because I travel and if I have problems, it really helps whomever I go see. Also keep a copy of your MRI discs and CT discs.
Hang in there, not to discourage you but my first s/s and flare was in 1981 and I wasn't dx until 2011. Neurologists can be a pain and sometimes you have to weed thru them til you find a good one!
You've gotten some good advice here from some great people
Hi I just left you another comment with update into but forgot to add it to my watch list, so that is all this is for.
Thanks,
Grams
Thanks,
Grams
Oh Grams, there is so much that needs to be better about your medical situation. Please do everything you possibly can to educate yourself about MS and find a doctor (primary, neurologist, or - wow - both) who cares about you and your health and will champion your case along the way.
I strongly suggest you take some time to look over the Health Pages that have been written by Quix and other members of this forum. They are easy to read, contain useful information and present real life examples from other people who share experiences similar to your own (whatever that is, for any of us, at the moment). The Health Pages often started as individual topics but are now titled subjects stored in an official and permanent place. You can always find links to them at the upper right side of the screen.
Of course we are also glad to help answer any questions you have. Quix is a valuable resource and friend to all of us here. I'm sure she will be back to sift through the extra information you have provided. You also needed a medical professional to look you in the eye, talk to you and treat your symptoms (no matter what the source is!).
Where is the pain you mention? That may need to be controlled before you can really concentrate on the rest. Just because pain is moderate enough for a person to be able to bear down and keep going doesn't mean it shouldn't be treated NOW. I call that a 'wearing pain" and by that I mean that it wears a person down. In the moment, you can continue almost as if it didn't exist. Over time it takes a toll that can cause other physical and/or emotional problems.
I absolutely DO UNDERSTAND when you say the grandchildren are your life. It will do them no good if you lose control of your own life in favor of their day to day care. So I urge you to make yourself a bigger priority, at least until you have a better idea of what is happening to you and how to control it. Let your daughters know that you support them but (young as they may be) they need to take primary responsibility for their children right now. You must all work together to insure that no one's needs are being ignored.
In the end, the energy all this takes can offer a huge payoff. Knowledge is power and symptom treatment can be energizing. You may well be sleepless about things that will never happen. Many of us here remain very functional after more than 20 years living with MS. I hope this doesn't sound uncaring. It is actually said from a great deal of concern.
Mary
I strongly suggest you take some time to look over the Health Pages that have been written by Quix and other members of this forum. They are easy to read, contain useful information and present real life examples from other people who share experiences similar to your own (whatever that is, for any of us, at the moment). The Health Pages often started as individual topics but are now titled subjects stored in an official and permanent place. You can always find links to them at the upper right side of the screen.
Of course we are also glad to help answer any questions you have. Quix is a valuable resource and friend to all of us here. I'm sure she will be back to sift through the extra information you have provided. You also needed a medical professional to look you in the eye, talk to you and treat your symptoms (no matter what the source is!).
Where is the pain you mention? That may need to be controlled before you can really concentrate on the rest. Just because pain is moderate enough for a person to be able to bear down and keep going doesn't mean it shouldn't be treated NOW. I call that a 'wearing pain" and by that I mean that it wears a person down. In the moment, you can continue almost as if it didn't exist. Over time it takes a toll that can cause other physical and/or emotional problems.
I absolutely DO UNDERSTAND when you say the grandchildren are your life. It will do them no good if you lose control of your own life in favor of their day to day care. So I urge you to make yourself a bigger priority, at least until you have a better idea of what is happening to you and how to control it. Let your daughters know that you support them but (young as they may be) they need to take primary responsibility for their children right now. You must all work together to insure that no one's needs are being ignored.
In the end, the energy all this takes can offer a huge payoff. Knowledge is power and symptom treatment can be energizing. You may well be sleepless about things that will never happen. Many of us here remain very functional after more than 20 years living with MS. I hope this doesn't sound uncaring. It is actually said from a great deal of concern.
Mary
First of all, thanks for all the new info and at least explaining stuff to me. The doctor I have at the moment doesn't explain anything just runs the tests and says yes or no and that's it.
I had forgotten that I have had another MRI but it was an open MRI and they weren't looking for MS and of course it showed nothing.
The test results I have are on 1 sheet of paper and are for the LP only. I do know that the blood serum test there were no O-bands in just the LP, if that means anything. The only other thing I have is the doctors report. And it took an act of congress to get those. The first round of blood tests all came back negative for things like RA (which my mother has) and a bunch of other things that I could not understand on the orders that were given to me.
One more question I have is I got liquid B12 complex and I take 2 ml a day, I need to know if this is the equivalent to 1000 mg that I am suppose to be taking?
I am confused about symptoms, now that I know that everything could be MS, I worry about every little thing that I experience, such as weakness in my left leg or aching in muscles in my hand, excessive headaches. If these things are not going on at the time of my dr. appointments the doctor doesn't seem to pay any attention to them, so I don't know what to think about them. I am a fairly new grandma with my oldest grand child being 2. My 2 year old grand son and my 2 month old grand son are my life. It is hard to sleep when in the fear that when I wake if I'll be able to walk or get out of bed so that I can play with them and take care of them, (as they and their mothers both live with us right now) is in the back of my mind. As far as the LP test results I do have those and it would be long but I could post them as well for you to possible better understand them.
I am at such a loss right now and know that if I start crying over what is to come, after watching my sister with this over the past few years I may not be able to stop, so I just try and keep going no matter how much I hurt or ache. Just some solid answers would help a lot.
Grams
I had forgotten that I have had another MRI but it was an open MRI and they weren't looking for MS and of course it showed nothing.
The test results I have are on 1 sheet of paper and are for the LP only. I do know that the blood serum test there were no O-bands in just the LP, if that means anything. The only other thing I have is the doctors report. And it took an act of congress to get those. The first round of blood tests all came back negative for things like RA (which my mother has) and a bunch of other things that I could not understand on the orders that were given to me.
One more question I have is I got liquid B12 complex and I take 2 ml a day, I need to know if this is the equivalent to 1000 mg that I am suppose to be taking?
I am confused about symptoms, now that I know that everything could be MS, I worry about every little thing that I experience, such as weakness in my left leg or aching in muscles in my hand, excessive headaches. If these things are not going on at the time of my dr. appointments the doctor doesn't seem to pay any attention to them, so I don't know what to think about them. I am a fairly new grandma with my oldest grand child being 2. My 2 year old grand son and my 2 month old grand son are my life. It is hard to sleep when in the fear that when I wake if I'll be able to walk or get out of bed so that I can play with them and take care of them, (as they and their mothers both live with us right now) is in the back of my mind. As far as the LP test results I do have those and it would be long but I could post them as well for you to possible better understand them.
I am at such a loss right now and know that if I start crying over what is to come, after watching my sister with this over the past few years I may not be able to stop, so I just try and keep going no matter how much I hurt or ache. Just some solid answers would help a lot.
Grams
I just want to say that I think it's terrible that doctors put us through this. I know that they aren't doing it to hurt us but it sure feels like it.
I don't understand why it takes so long.
I wish that we as patients had a voice in this process. Like a union that could sort of travel and watch the doctor. I know we can't but I wish we could.
Red
I don't understand why it takes so long.
I wish that we as patients had a voice in this process. Like a union that could sort of travel and watch the doctor. I know we can't but I wish we could.
Red
Hi Grams,
You have already had the best help and suggestions given above. I just want to encourage you to really be in charge of your care and be prepared. When the doctor says it's not MS, ask him what it is or what he is thinking beyond the B12 issue.
As long as the O-Bands are in the spinal fluid and not in the blood you have a positive test. That is very important.
Good luck, Red
You have already had the best help and suggestions given above. I just want to encourage you to really be in charge of your care and be prepared. When the doctor says it's not MS, ask him what it is or what he is thinking beyond the B12 issue.
As long as the O-Bands are in the spinal fluid and not in the blood you have a positive test. That is very important.
Good luck, Red
HI Thank you for all your information. As far as the blood work they have done yes they tested for a lot of things such as RA and others that I can't remember as I only saw the orders for them once. I do know the only thing that came back on my serum test results was a severe vitamin b*12 definciency which I am taking a liquid vitamin supplement for to try and raise it or they will put me on shots for it. I have only had one MRI to date and am scheduled for another Sept. 2. The only test results I have is of the first and only MRI and the LP. The LP showed 12 O-bands, high for IgG index and low lymphs everything else was in normal range but on the high side of normal.
The first neurologist I had was not and MS specialist but the one I currently have is. And the new MRI she has ordered is with MS Protocol whatever that means. I am usually in such shock when getting the results of my tests that all my un answered questions just leave me and I can't remember to ask a thing. To date the only physical test that I have trouble with is balance.
Yes my ON was documented and I have been under treatment with a neuro-optomologist for it. I was put on a regimen of 1000mg of predisone for three days....orally. That was real interesting due to the fact that I had to take 20 pills a day as the somewhat small town I live in only had the smaller dose of predisone. I am pretty much over the ON but lost some peripheal vision in the process and now also have a vitrious detachment from it which they are monitoring.
When the ON started subsiding, I started getting headaches. I thought it was just a migraine which I have suffered from for about 4 years. But this headache was so severe I could not go outside in the sunlight, I could not have lights on in the house, I had to keep my TV down very low or on mute and try and read the dialog. It became a constant headache that would not go away no matter what I did or what I took for it. The first neurologist put me on Lyrica which grew to 300 mg a day. I am now also taking 800 mg Ibuprofen 2-4 times a day as the headaches are back but not as severe.
I live in a town where there is only one neurologist and he is not a nice person and not an MS specialist. I have to travel about 60 miles to the one I am currently seeing. I don't know if she is looking into it being anything else due to the symptoms I have had, am having and that my little sister also has MS, only a very severe case of it. Anymore information you have to share would be greatly appreciated. A lot of symptoms I have I try to just dismiss as it being something else and just keep going. But yes this limbo thing is wearing me down.
Thanks,
Shawna
The first neurologist I had was not and MS specialist but the one I currently have is. And the new MRI she has ordered is with MS Protocol whatever that means. I am usually in such shock when getting the results of my tests that all my un answered questions just leave me and I can't remember to ask a thing. To date the only physical test that I have trouble with is balance.
Yes my ON was documented and I have been under treatment with a neuro-optomologist for it. I was put on a regimen of 1000mg of predisone for three days....orally. That was real interesting due to the fact that I had to take 20 pills a day as the somewhat small town I live in only had the smaller dose of predisone. I am pretty much over the ON but lost some peripheal vision in the process and now also have a vitrious detachment from it which they are monitoring.
When the ON started subsiding, I started getting headaches. I thought it was just a migraine which I have suffered from for about 4 years. But this headache was so severe I could not go outside in the sunlight, I could not have lights on in the house, I had to keep my TV down very low or on mute and try and read the dialog. It became a constant headache that would not go away no matter what I did or what I took for it. The first neurologist put me on Lyrica which grew to 300 mg a day. I am now also taking 800 mg Ibuprofen 2-4 times a day as the headaches are back but not as severe.
I live in a town where there is only one neurologist and he is not a nice person and not an MS specialist. I have to travel about 60 miles to the one I am currently seeing. I don't know if she is looking into it being anything else due to the symptoms I have had, am having and that my little sister also has MS, only a very severe case of it. Anymore information you have to share would be greatly appreciated. A lot of symptoms I have I try to just dismiss as it being something else and just keep going. But yes this limbo thing is wearing me down.
Thanks,
Shawna
If you look at the top right you can click on health pages there is a one on the LP. What is key is having 2 or more o bands in the spinal fluid and none in the blood serum they take at the same time. I had 12 o bands only in the CSF. I had had several postive MRIs for MS lesions and other tests for MS and negative blood work for a bunch of other things over two years time.
After the LP they then did a whole host of blood work looking for Lupus and such.
Also look at the health pages for the McDonald Criteria. MS is diagnosis of exclusion. There are hundreds of Neurological disorders and over 30 other diseases which mimic MS. The diagnosis time table is different for each person and can be very frustrating and at times scary.
Try not to worry. The not knowing what we call limbo is the hardest part. Is the Neurologist an MS Specialist? If not may be you would try to get referred to an MS Specialist.
The way Neurologists work is it is not MS until it is. For example I was looking at notes from one of My MS Specialists. He wrote the first time he saw me patient does not have MS. Then the next time looking at the same MRI he wrote this MRI is definitely an MRI of someone with MS. Go figure but that is the way they work. The Neurologists would vaguely tell me I will be diagnosed with MS in the future. I thought they were all nuts or incompetent until I realized how the diagnosis process works. Until every thing lines up they just will not call it MS.
I am sorry you are going through this.
Alex
After the LP they then did a whole host of blood work looking for Lupus and such.
Also look at the health pages for the McDonald Criteria. MS is diagnosis of exclusion. There are hundreds of Neurological disorders and over 30 other diseases which mimic MS. The diagnosis time table is different for each person and can be very frustrating and at times scary.
Try not to worry. The not knowing what we call limbo is the hardest part. Is the Neurologist an MS Specialist? If not may be you would try to get referred to an MS Specialist.
The way Neurologists work is it is not MS until it is. For example I was looking at notes from one of My MS Specialists. He wrote the first time he saw me patient does not have MS. Then the next time looking at the same MRI he wrote this MRI is definitely an MRI of someone with MS. Go figure but that is the way they work. The Neurologists would vaguely tell me I will be diagnosed with MS in the future. I thought they were all nuts or incompetent until I realized how the diagnosis process works. Until every thing lines up they just will not call it MS.
I am sorry you are going through this.
Alex
Hi Grams,
If you had O-bands in your CSF, and none in your blood serum, it would be a positive LP but unfortunately none of the tests that are run for us can exlusively state "you have MS."
Do you have all your test reports?
MS is a clinical dx and and I'm guessing since this Dr. is reluctant to dx you with MS there must be some pieces missing to the puzzle to convince her. Now, whether this is because she's not run enough tests or what she's gathered so far isn't pointing in the MS direction, I just don't know. But, doing nothing on your behalf is unacceptible.
Is this the Dr. who dx'd your sister?
Was your incident of ON documented? YOu are at a greater risk of developing MS if you have lesions in you CNS at the time, and if you develop them soon after. Sorry to be vague, I'm going to pull up the study info for you and post it because it's more specific.
Were the MRIs run around the same time frame?
And, are you in the position to get a 2nd opinion? I mean, honestly, if she's not willing to look for a cause to your problems it's time to move on.
This is all so stressful, and yes, you explained it very well.
Thank you for joining us, hope we can help you out with some next steps.
Sorry for all the questions,
-Shell
If you had O-bands in your CSF, and none in your blood serum, it would be a positive LP but unfortunately none of the tests that are run for us can exlusively state "you have MS."
Do you have all your test reports?
MS is a clinical dx and and I'm guessing since this Dr. is reluctant to dx you with MS there must be some pieces missing to the puzzle to convince her. Now, whether this is because she's not run enough tests or what she's gathered so far isn't pointing in the MS direction, I just don't know. But, doing nothing on your behalf is unacceptible.
Is this the Dr. who dx'd your sister?
Was your incident of ON documented? YOu are at a greater risk of developing MS if you have lesions in you CNS at the time, and if you develop them soon after. Sorry to be vague, I'm going to pull up the study info for you and post it because it's more specific.
Were the MRIs run around the same time frame?
And, are you in the position to get a 2nd opinion? I mean, honestly, if she's not willing to look for a cause to your problems it's time to move on.
This is all so stressful, and yes, you explained it very well.
Thank you for joining us, hope we can help you out with some next steps.
Sorry for all the questions,
-Shell
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You have a lot of interesting parts to your story. I basically agree with everything that people have told you, but some things I would like to add to.
First, you are probably aware that with a first degree relative (your sister) with MS your risk of having MS is raised from about 1 in 750 (given your location) to 1 in about 50. So we have to pay really close attention to your data, because you are at higher risk than the average bear.
Then you have a bout of optic neuritis. This alone raises your risk to about 1:3. So now we really have to pay attention to the smallest detail.
The diagnosis of MS is made by first examining the pattern of symptoms. We know about the optic neuritis and some balance/dizziness? issues. When did all that start? Having another neurological symptom in addition to the optic neuritis makes your case very compelling. If the balance symptom began significantly later than the ON then you have had 2 separate attacks - needed for the firm diagnosis of Relapsing Remitting.
You have only had one MRI and I gather it was just of the brain. You state that it showed white matter. White matter makes up the majority of the brain so it makes me want to ask what it was that was in the report that spoke about white matter. The neuro is saying that it showed no lesions. Was she the one who ordered the MRI in the beginning?
The spinal tap info is incomplete, but we know some important things. One we know that there were some white cells and 100% of them were lymphs. This is not necessarily a high result. Any cells that are seen should have been lymphs. So as long as there were less than 10 or so then this is all okay.
The IgG Index is elevated. This is important. Within the context of MS this is considered a "positive" result. The O-Band info doesn't tell us enough. 12 O-Bands in the CSF is a lot, but only if 2 or more of those O-Bands do not also appear in the serum. It is not the number of O-Bands we look at but the number of O-Bands that are UNIQUE and are not ALSO present in the serum. So we need to know what the O-Band status in the blood that should have been drawn the same day as the spinal tap was done.
There is NO official "MS Protein" so I don't know quite what to make of that result.
So, this neuro is uninterested in anything regarding MS unless there are MRI lesions. This is typical, but a little narrow-minded. The diagnosis of MS "can" be made without MRI lesions - tho it rarely is.
Now you are having a new MRI with "MRI Protocol". This makes me worry that the first MRI was not done using the specified strength and techniques that are recommended in looking for MS. If the first one was NOT using the protocol then we really don't know whether you had lesions or not. Also, have you had an MRI of the spinal cord? This is required if the brain MRI does not give enough data for making the diagnosis.
Now, your B12 is really low and that can cause severe neurological symptoms that mimic MS. You are on supplements which should be 1000mg daily.
Your ON was treated with oral prednisone. This is not recommended. When they studied the use of IV steroids vs. oral steroids vs. no treatment, they found that the end result (vision loss) wasn't changed no matter what they used. But, symptoms tended to resolve faster with steroids. However, the use of oral steroids was associated with a higher rate of recurrence of the optic neuritis. So people who were treated with oral steroid tended to have more episodes of the eye inflammation.
New onset of a different type of headache can certainly be an MS symptom. It is not unusual. The onset of migraine disease in the 40's is a little late and makes me wonder whether their appearance is actually a manifestation of MS. It's hard to know.
So, I am glad you are willing to travel to see a better neurologist. It isn't clear, though, what you think of the new doctor. I hear reservations, and I have some also. I think your best plan is to go on with the next MRI and see what it shows. Again, if it is not helpful, I would advise you to ask for an MRI of the spinal cord as is recommended by the expert panel recommendations.
Can you find out about the number of O-Bands that were in your blood at the time of the LP? This would help us evaluate the meaning of the 12 O-Bands. I am impressed by the elevated IgG Index, but this is given less weight than O-Bands by most of the MS field.
You talk about self-dismissing a lot of symptoms. What have these other symptoms been?
And make sure no one tries to tell you that you are too old for MS. There is NOT an upper age limit. It has been seen to begin as late as the 70's and as early as 18 months. Many of us here were diagnosed in our 50's and 60's.
Well, a lot of info. If I raised more questions, please ask. I am a retired physician with MS so I try hard to give good info.
Welcome again,
Quix