I am in the process of getting some of my results back from my lumbar puncture to test for MS.
Any help would be greatly appreciated in understanding these and which ones i should be worried about.
My one question is, ive seen the standard ranges vary from person to person, how does this work, and how do i know the standard range is correct??
IGG INDEX, CSF + BLOOD
IgG (serum) my value: 1200 standard: 694 - 1618 mg/dL
Albumin (serum) my value: 4.6 standard: 3.7 - 5.1 g/dL
CSF IgG my value: 2.5 standard: 0.8 - 7.7 mg/dL
CSF Albumin my value: 18.4 standard: 8.0 - 42.0 mg/dL
CSF IgG Index my value: 0.52 standard: <0.66
CSF IgG Synthesis Rate my value: -2.9 standard: -9.9 - 3.3 mg/24h
CSF Protein my value: 47 standard: 15 - 45 mg/dL H
GLUCOSE, CSF - LAB
CSF Glucose my value: 56 mg/dL
-Reference Range: concentration of Glucose in CSF is about
60-75% of that in corresponding plasma.
CSF Angiotensin-1-Conv Enz my value: 10 standard: <=15 U/L
CSF VDRL my value: NONR standard: Nonreactive
CSF Lyme Antibody
LYME DISEASE AB [IgG],IFA <1:4
B BURGDORFERI IgM, IFA <1:1
ANTIBODY NOT DETECTED
REFERENCE RANGES: IgG <1:4
Diagnosis of infections of the central nervous
system can be done by demonstrating the presence
of intrathecally-produced specific antibody.
However, interpreting results is complicated by
low antibody levels found in CSF, passive
transfer of antibody from blood, and contamination via
bloody taps. The interpretation of CSF results
must consider CSF-serum antibody ratios to the
infectious agent. However, demonstration of class
specific antibody IgM in CSF may be diagnostic.
The intrathecal synthesis of Lyme disease
antibody is most accurately measured by
performing the Lyme Disease Antibody Index
for CNS Infection.
these are all ive gotten so far other then me WBC count which is 3 out of 3-5.
any help would be great! thanks for your time and god bless!
Hi Samantha - Others can likely provide greater insight into your specific results, but nothing seems to scream MS. The standard ranges usually vary from lab to lab, rather than from person to person. Results vary from person to person. The standard values you posted here match those of my LP test results.
One of the primary things they look for in LP tests is the presence of oligoclonal bands in your CSF that are not found in the blood (serum) drawn at the same time. I did not see any mention of o-bands in your results. Is this one of the results you are waiting for?
I am sure you are quite frustrated and anxious simultaneously in regard to your results.
Diagnosing MS is quite fickle sometimes. Neurologists tend to rely on dissemination in time and space, their physical exam they perform on you, laboratory (blood and LP) and diagnostic tests (MRI, evoked potentials).
With regard to your LP and results, as kwarendorf stated, the results do not rely solely on the individual's CSF findings because they can be different from person to person, its also the laboratory's reference ranges.
With MS, the Neurologist looks at any form of any damage in the blood brain barrier (IgG Synthesis Rate -- which is a product of a formula the laboratory uses between your CSF and blood serum IgG and albumin) as well as oligoclonal bands present in your CSF but not serum.
Not everyone will fit the criteria with their LP results but may clinically prove to the Neurologist through physical examination, relapses that are documented via medical professional, changes in MRI showing increase lesion load or enhanced lesions and etc.. As you are probably aware, there are some people here who have had no "OCB" in their CSF but have received a diagnosis of MS due to other findings their Neurologists have observed or tested.
I realize that you are feeling a bit impatient with all of this. Many here have gone through this for years and some a very short time.
You know there's something going on with your body and no one can be a better judge than yourself. Although, you may get tired of the testing and going from one specialist to another, including your PCP and Neurologist, you must keep going in a healthy way to find out what is interrupting your lifestyle.
I must say though, there are times when I was gung-ho about getting a diagnosis for almost two years. (still don't have one save for possible MS). At times I felt empowered that I was taking control over my health issues and visiting every tom, **** and harry to obtain a diagnosis and other times I felt out of control, heavily relying on a cut and dry diagnosis.
Now, when I am in some sort of feeling normal, I put my concerns aside. Only when something abnormal happens (that is unusual) is when I get itchy to hop on that bandwagon again.
My advice, is to take one step at a time as you are doing and allow yourself to feel frustrated, disappointed, cry, etc and use resources such as this place (which I consider invaluable), family and friends to help you through your journey.
I hear that sometimes it takes awhile (3 weeks maybe?) to find out what your OCB status is from your LP.
In the meantime, keep the faith, stay emotionally strong and ensure you will get the "proper" diagnosis instead of settling for anything.
Within the last few months i have had MRI's from my lumbar spine up to my brain. No lesions on the MRI.
i am now on my husbands union insurance through his job, so id like to get another MRI done while i have the chance before they do away with the Union. maybe some things have changed. I'm going to try to get as much done and see as many doctors as i need to in order to get some kind of answer. and i wont stop until i do. :). ( also, I do understand MS is very hard to diagnos), so i give credit to the doctors who take their time in making sure they check every possible angle.
The LP was very painful, but yes i did survive it. Not sure if i could ever get another one though!
If you had a MRI of the brain and cervical/thoracic spine within the time frame of 3 months (I took what you said literally when you said "within the last few months), I dont know if the doctor would order a new one at this time. Normally its every 6 months to annually. However, I can be wrong and perhaps they would do so.
If you do get another MRI of the brain and spinal cord, might I suggest you ask your Neuro if you can have it done on a 3T? Perhaps that machine can pick up something the 1.5 did not. Never know.
Sorry your LP was painful! Sheesh! Yikes! I'm glad you did not have the post procedure headache though!
It's like having babies, once the pain is away and time passes by, you could do it :P
I can't believe how much detail you receive with these results! I had my LP on the NHS and the doctors don't give any detail here whatsoever; just a straightforward 'yes there were bands in the csf'! will your doctor go through those results with you? I'm sorry the LP was painful; I found the opposite; it was pain free in fact BUT omg the pain and troubles afterwards were awful (noise distortion, legs went numb & excruciating headache) I think that was just bad luck though coz of having it done in a hospital which was quite a long drive back (obviously I wasn't driving, I should add!!!) all the best to you!
actually, i did get the spinal head ache, and it was ridiculous! For the most part it is gone now, however, it comes and goes every once and while throughout the day. I was in extreme lowerback pain after the LP.
Anyway, yes Lisa, I will defintely ask him to use the T3 next time. I have a follow up appt on oct 9th, next tuesday to go over the results and see what he suggests next. I hope he doesnt just stop everything there.
He said since the MRI showed no active lesions and the spinal tap was ok other then high protein that i can't get the Evoked Potential test done. Is this true that he "can't" send me to get it done, or can he still send me if i beg?
I started the MRI's in July, and ended in August, so if i have to, i will wait and make sure they give me another MRI after the wait time is up.
Fibromyalgia is also soemthing i could have, so i hope he gives me some info on that. What tests would they do for testing for that? I've definitely had specific episodes that something is definitely nuerologically wrong- like the urinary hesitation that i had 3 months ago. that was a big indication.
There's a difference between no "active" lesions and actually having lesions. There are some people with the diagnosis of MS who never "caught" active lesions!
So you either have lesions and they were not active or enhanced or you dont have lesions whatsoever. Which one is it?
I think it's smart to have a T3 done. Why not if they are going to order a new one right?
Have you seen a rheumatologist yet? If so, I think they are the specialty people who diagnose fibromyalgia, altough, I know that Neurologists can make them too.
In my opinion (which is not expert by the way) I think when you have symptoms, of multifocal or monofocal etiologies, I see no reason why an evoked potential tests can be ordered? If you have to beg to have it done, I'd say find a different neuro. I would think if he is aware of your concerns with your health and symptoms and how it is affecting your life or daily activities of living, he would have no problem ordering specific tests such as that to ensure nothing is wrong. Again, that is MY OPINION and may not carry well with others or doctors. What does it hurt him to order it? This or your health is not a game. It's affecting how you live and you WANT to know what's causing it and will have diagnostic and laboratory tests done to figure it out. I would say you are amiable to this, what is his issue?
Trust me, if it was him, he would be having every test under the sun until he found out the answers and because he has a medical background, he would persist.
I only know from my experience that MRIs are performed in six month to yearly intervals. Mostly 6 months to closely monitor. Anything before that (within three months) I haven't heard of. But does not mean it couldnt happen either.
I think you're a smart woman and a great advocate for yourself. I am happy to know that you won't settle for "iffy" answers and/or explanations.
I have no doubt you know something is wrong with your body physiologically and do not need to promote your concerns with me. I believe you. I hope you're satisfied with your Neurologist and/or PCP.
Yes, I would state to your present Neurologist that you wish to have those evoked potentials ordered and are amiable to whatever tests that can be performed to help narrow down the reasons why you're having what you're having. I would also mention to him whenever he will reorder the MRI of the brain, cspine and tspine to ensure it is done with 3T. Accept nothing less.
Although 1.5 Telsa can show lesions as small as 3mm. Sometimes it doesnt pick up what is there already. However, I should warn you, you may not show active lesions for one obvious reason (you may not have MS) and another reason, there are people who have MS or diagnosed with MS who had NEVER shown enhanced or active lesions when they had MRIs done. Yes, there may have been evidence of increase of lesions is quantity or in size and some went years without showing any evidence to the aforementioned.
As they say, MS is specific to the individual rather than comparing to other MS patients. Some things may have continuity, but some things may not.
Take great advantage of your husbands excellent insurance!
just remember that 10% of MS patients never show bands in their CSF.
I have no bands showing in mine and have had, they figure, MS since 1981, although I was not Dx until 2011. The LP is no longer the gold standard it used to be. Some docs won't even bother doing it.
Sometimes the tests results for bands takes longer to come back than some of the other information.
I see your neuro ran a Lyme antibody test on your CSF. I also had that test run and it came back negative. (I do have Lyme and not MS.) I have since learned in my research that the original assumption that all Lyme patients with neuro symptoms will have antibodies in their CSF is a poor one. It turns out that only 10-30% of Lyme patients who have had the CSF test will test positive. A positive is confirmative. A negative doesn't mean anything.
I encourage you to get tested for Lyme at IgeneX before you exclude it, especially if there are doubts about MS. They do more advanced testing, I tested positive there. (I have neurologic Lyme...no joint problems or arthritis. People with neuro Lyme seem to test false negative more often on standard antibody tests.)
I found this short document that explains the most common differences between MS and Lyme mimicking MS, but it has a fair amount of medical-ese in it. (It doesn't get into the differences between the brain lesions each can cause.) It might be helpful for you.
had my follow up appt from my spinal tap on tuesday.
he is sending me to an MS specialist and a rheumatologist for fibromyalgia. He doesnt know which one, but thinks its one of them. He said my previous issue with hesitation when urinating is what bothered him b/c that kind of thing doesnt just happen.
i see the rheumatologist on oct 26th this month and i'm still waiting on appt's for the MS specialist.
i didnt think they sent you to an MS specialist unless they really believe you have it?
This is one of my ongoing symptoms. It is one of my symptoms that has been around for a while. I never connected it to other symptoms and the urologists I saw never mentioned MS. Turns out it is MS related, as there is nothing wrong with my plumbing.
I take .8mg Flomax every day. It's a drug designed to deal with enlarged prostates. There is nothing wrong with my prostate (and you don't even have one!) but the med definitely helps.
Regular neuros recommend MS specialists for a variety of reasons, i.e., when they cannot be certain it's MS, or just the opposite when MS is dx'd, but the case is difficult, or for a 2nd opinion to their dx. Reasons surely vary from case to case.
I agree w/Sarahsmom that it may be suspected, but also that it's not a definite either way. Some MS specialists have more experiences w/MS patients than regular neuros. While some, "only" see MS patients, etc..
You are on to your next round lady. Good luck at your next appt. and I hope you know something either way soon.
the o-band test came back the day OF my follow up, he didnt sign off on it util then b/c he was on vacation.
here are those results:
Oligoclonal Bands, CSF SEE BELOW
No bands Reference Range: No bands
No oligoclonal bands were identified in this
patient's CSF when compared to their
corresponding serum sample. The clinical
significance of a numerical band
count, determined by Isoelectric Focusing, has
not been definitively defined. The data should be
interpreted in conjunction with all pertinent
clinical and laboratory data for this patient
doesnt look like anything here, but he still thinks i have MS. so we will see! im so glad to have gotten to my next step. i called my family doctor and requested to be specifically tested for Lyme b/c thats a big possibility also. waiting to hear back from them.
im sorry to hear you deal with the hesitation when urinating often, kyle. it was def scarey! i was lucky enough to only experience it for one week.
i see a rheumatologist oct 26th. he said he wanted me to be checked for fibromyalgia just incase.
Information gathering is the key to finding a diagnosis. Now you have more information.
It's important to clear up a point raised by LisaJF. You said your doctor said your MRI did not show any "active lesions". He needs to clarify what he means. Did your MRI show any inactive lesions? Did they show no lesions at all?
If they showed no lesions at all, and your LP did not show any O-Bands, it might not be MS. If you have inactive lesions, the negative LP doesn't really count for much these days.
Agreed Kyle that particular point needs clarification from her Neuro in regard to "no lesions" versus "no active lesions".
However, in one of her previous posts she states "no lesions on the MRI" and from somewhere I thought I "no active lesions". (Am I losing my mind? I can't even find that part!) (Don't mind me, I just may be losing my mind).
Your mind may not be in the Lost & Found after all. This from a post in this thread...
"He said since the MRI showed no active lesions and the spinal tap was ok other then high protein that i can't get the Evoked Potential test done. Is this true that he "can't" send me to get it done, or can he still send me if i beg? "
Correct, no lesions at all. sorry for the confusion guys.
my family doctor just ordered me the western blob lyme disease test to rule that out. and i see my rheumatologist on oct 26th to see if its fibromyalgia. im still leaning towards MS, but these other things are possinilities too. i guess we'll see!
today i wont up with a very bad muscle ache from my lower neck to the back of my sholder going towards my mid back. i definitely didnt sleep wrong, and i always sleep on my back. I'm so confused as to how i get these really bad muscle pains. i can hardly move my neck at all b/c it shoots fown my shoulder in the back and thoracis area. ugh :'( i cant take too much time off work, so i came in today, and now im suffering. even vicodin doesnt do anything!
Sounds like fibro to me, however there is no f
diagnostic test to prove you have it. There are certain points on your body, either 16 or 18, if you've had pain in 11 (I think) of those points for 3 mos or longer they can dx you.
Personally, I wouldn't waste my time or the ms specialists time since there are no lesions on your brain or spine and the lp was negative. I think it's more important to have this lyme test first, and all of the other blood tests your pcp should have ran before sending you to a neuro.
Back to a fibro dx...fibro has many of the same sx as MS. Horrible fatigue, muscle spasms, memory problems, sleeping problems, depression. Although I'm unaware of any urinary problems related to fibro, there could be another explanation other than MS.
I admire your commitment to getting yourself a dx. I am the same. I get very focused and determined to get answers...almost to the point where I'm obsessed. That being said, I wouldn't throw all your eggs in the MS basket. Like I said earlier, I think you should go back to your pcp and have blood work done. Your lyme test, vitamin deficiencies, an ANA test, basic metabolic panel for your glucose level, etc. These should have been done from the very beginning, and will help with a dx or rule another out.
I would still see the rheumy, because of the fibro. The rheumy can also run tests to check for RA, lupus, sjogrens, and other rheumatic diseases.
And of course, just because you might get one dx doesn't mean you don't have something else going on as well. Let's say you do get a fibro dx, and 6 mos latter you experience a bout of neuropathic pain. Fibro causes muscular pain but not neuropathic so there would have to be something else causing it other than the fibro.
**sighs** So much what ifs, and it could be this or that. I'm over tired and rambling. My apologizes.
Just go to your pcp and rheumy appts and let us know how it goes!
wow thanks Laura. yes, you sound just like me. obsessed with getting somewhere in this fight and trying to succeed at it to get answers.
im definitely ready to go to the rheumatologist and see what they say, also i got my family doctor to order the Western Blot Lyme test from CA, so that should be in soon and i can go get that done.
ill update when i do go back to the doctor soon/ next week.
yesterday i had another severe pain feeling that ran down the back of my neck and into my back/ shoulder blade. SOOO absolutely painful, i couldnt even sit at my desk at work without wanting to cry. yesterday evening and into sleep that night i wore a therma care heat pad that is used to wrap around yoru back. i wrapped it over my shoulder around my neck and under my left arm to try to get the heat to hit it. it doesnt hurt as bad today, but it is still very painful. :/
Sounds like you are working all possibilities, which I think is wise. It takes too long to do work ups for one of these conditions at a time and you could decline while waiting.
When I suspected Lyme, I still went through the MS work up because multiple doctors recommended it. It was helpful to have an MS specialist say that I didn't have it so we could put it to rest.
That is great that your doc agreed to the IgeneX test. It should be helpful. False negatives are possible there, but less common. If you have been sick less than a year, odds are good it will show signs of Lyme if you have it.
I have the hesitancy when urinating, too. You can see why it can get so tricky to differentiate between these conditions. While the underlying cause is very different, the outward presentation can be very similar. Fibro should be the diagnosis of last resort, after eliminating everything else, as there are no tests to confirm it.
If you do have Lyme, heat can help ease pain. (Many pain killers don't help with Lyme pain, but different people respond differently.). I used a heating pad for my abdominal pain. Just be careful not to lie down on the heating pad as it can burn you without you even realizing it.
hello everyone, I just stumbled on this MS chat while trying to find information on whats is the standard range for O bands. At this time I haven't found anything yet. Does anyone know the answer?
I have read the chats from Oct 3 to current. there is a chart listed @ www.aafp.org for CSF standard. It even has a list with diseases(MS). Type in Cerebrospinal Fluid analysis. you'll find it.
To Samantha, It upset me to hear your LP was painful. I had one done last week. I had no pain. My test was done by a radiologist at the hospital. If anyone has to have this done. I recommend a radiologist. He was wonderful and well experience because of where he's employed.
To give a background about myself, i am 39 years old and have had symptoms for about 5 years now. In the past 9 months, all of my symptoms have gotten worse and vertigo has set in. In the beginning doctors kept telling me,I was too young to feel this way. Sad part is, I believed them at first. Last year I finally got to a rheumo, she DX me with fibro but strongly believe this was my secondary problem and ran a blood test. all negative. (so frustrating). Early 2012 is when the vertigo set in and the events lead me to a vestibular lab. results, failed 2 of 3 test, then MRI of brain with and without contrast. came up abnormal. MRI suggests Dawson Fingers(MS). Now I'm being seen by a Neuro. I had to take the first available appt because I had an incident of lost vision in right eye. I do not care for this doctor and as soon as I get my final results of LP. I will be switching. So today I got some results of LP( which is available to me online). I am trying to get answers on the O bands. I have those results. I have 6% bands. Any input would be great.
I am very frustrated because my primary md read results from brain MRI, told me I had MS. took me out of work, not aloud to drive. on SSD which I'm so thankful I have this benefit. When I went to Neuro I was expected to start some form of treatment but instead, off to the races with more and more test. By the end of this month, I've had @12 test done in the last 2.5 months.
I have been told, that joint pain can be MS eventhough it is not listed as a symptom. I have read lupus, sjogren. All my spmptoms correspond with MS. I think I am so close to having a 99% answer, I cant stand it. I work with a young lady who has MS. She gave me her advice. If you don't like your doctor, find another one. BE PROACTIVE in finding all information.
My advice, DON"T let a doctor tell you what or how you should feel. It is your body. You know it the best, not them. Thank you community for listening...lol or reading. God bless you all. Christine
" I do not care for this doctor and as soon as I get my final results of LP. I will be switching."
I did the exact same thing :-)
RE: O-bands I have never seen them expressed as a percentage. Mostly I have seen them expressed as a number. For example I have > 5 o-bands in my CSF not found in my serum. Does your lab report express a number?
hello, It has" 6 " under bands. but all the way to the right side of the page it has a % sign. If you are saying no %, then I know now it doesn't belong. another thing i forgot to mention was my RBC was 220. When i research this, my understanding is there should be no RBC in CSF. but it did state trauma to spinal cord. would having the LP do this to RBC?
my cell count-CSF
all CSF and no serum result yet
do you know if any of these numbers mean anything else?
thanks a million
Don't forget the Thyroid (maybe you did and I didn't see it)
All the same symptoms an most Doctors won't recognize the "new" norms in testing.
I had an MRI that showed lesions some typical and some atypical of MS, then LP with elevated protein and 2 O bands (none in serum) and many symptoms … But Neuro wants to wait and do a follow up MRI in five months
In the mean time my reg. MD tested my thyroid and it was 5.11 TSH so she ordered FT3 and FT4. All fell within the old range but my doctor said the old norms are a bunch of bs basically and put me on Armour.
What a change for me!!! I still have other symptoms but I don't get up everyday dragging and feel as though I was hit by a truck.
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