CSF results. MS?

[xxSamanthaJ]

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
SEE BELOW

LYME DISEASE AB [IgG],IFA <1:4
B BURGDORFERI IgM, IFA <1:1
INTERPRETATION
ANTIBODY NOT DETECTED
REFERENCE RANGES: IgG <1:4
IgM <1:1
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!

[xxSamanthaJ]

and this just came in also:


CSF Myelin Basic Protn my value: <2.0 standard 0.0 - 4.0  mcg/L
-Reference ranges for Myelin Basic Protein:
Result Interpretation
0.0 - 4.0 mcg/L Negative
4.1 - 6.0 mcg/L Weakly Positive
Greater than 6.0 mcg/L Positive

[kwarendorf]

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?

Kyle

[xxSamanthaJ]

yes, i do believe that is one they are testing for, which i have not recieved back yet. It's so hard to deal with this, there is something majorly wrong but i'm not seeing any evidence. :/

[kwarendorf]

That is the frustrating part of the diagnostic journey. There are often more questions than answers.

Have you had MRI's of your brain and c-spine, with and without contrast?

Kyle

[LisaJF]

Hi there!

I'm glad you made it through your LP!  Congrats!

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.

Keep us in the know!

Lisa

[xxSamanthaJ]

thank you Lisa and Kyle for your input.

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!

[LisaJF]

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

-hugs-

Please continue to let us know what's going on!

Lisa

[zoefromsussex]

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!

[xxSamanthaJ]

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.

thanks guys!

[LisaJF]

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.

Let me know how it goes.

Lisa

[xxSamanthaJ]

Thanks Lisa,

You're right, if it were him, he'd be doing every and any test he could to find out what was wrong with him, b/c he has the resrouces and knows it can be done.

Now that I am on my husbands AWESOME insurance, i want to get as much as i can done before they do away with the union, which covers 90
% of all procedures.

I will make sure I get answers, and if i dont, there are many other nuerologists in the area.

I saw yesterday that a lady on dr. oz show went to 30 different nueros until she got diagnosed with MS! isn't that crazy!?

[LisaJF]

Insane is right!

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!  

When do you see your Neurologist again?

Lisa

[xxSamanthaJ]

My next appt is tuesday sept 9th for a follow up. I'll make sure i push it so i can get answers adn get as much done as i can. If not, on to the next nuero.

[SarahL2491]

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.

[xxSamanthaJ]

So im gussing i should push for another MRI? or push for the evoked potential test??

[Ricobord]

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.

http://asp.cumc.columbia.edu/lymedisease/askthedr/for_pt/displayanswer1-lyme.asp?Departments=LymeDisease&Controlnumber=284

[Ricobord]

Forgot to mention...this paragraph on the Columbia web site indicates that Lyme is more likely to produce elevated protein in the CSF.

[xxSamanthaJ]

Thanks, i will def check that out!

[xxSamanthaJ]

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?

Glad I'm getting somewhere!

[SarahL2491]

So did he mention any "O" bands when he called?  That would tell you something.  He must suspect MS if he's sending you to an MS specialist.
Keep us posted and good luck

[kwarendorf]

" hesitation when urinating"

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.

Kyle

[sllowe]

Hi there,

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.

[xxSamanthaJ]

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.

[kwarendorf]

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.

Kyle