Need Your Help : MULTIPLE RESTRICTION BANDS, CSF/SERUM

[cherubi]

Hello,
I am new here and thought that perhaps I would be able to get the most help from people who have gone through this...the doctors have been no help. I feel so alone and abandoned by the medical system, and am desperately trying to find out what this illness is, which is only getting worse

I am in my 30's and have been without diagnosis for over 2 years with muscle weakness, muscle twitching, dizziness, feeling off balance walking, stiffness in muscles, aching in entire back and more so in low spine and hips, and tremor in upper limbs(more on one side, anytime I use my hands). Mild sensory stuff, random needle jab and stinging in hands and feet, buzzing vibrations in arms and legs(like an electric current flowing or circulation coming back sensation, especially when I stand and then sit down, the buzzing gets worse in my legs).

What is really upsetting to me, that finally I have something abnormal come back (in a sea of normal results from other lab, mri, emg testing) and the MS specialist blows it off. The neuro said that it doesn't mean anything, but reading around the minimal material available online about spinal tap results, I know my results mean SOMETHING, even if the band pattern is not specific to MS.

When I received my spinal tap results, it came back with:
MULTIPLE RESTRICTION BANDS IN BOTH CSF AND SERUM; CANNOT DETERMINE THE ORIGIN OF BANDS, CNS or SERUM.

1) Which pattern is this, is this considered the "MIRROR" pattern?

2)If you have any understanding about this pattern, please share it with me.

3)Which other illnesses could be responsible for this pattern, if this is considered a MIRROR pattern?
I have a feeling that this pattern and the illnesses associated with it, are the big clue to a differential work-up for my undiagnosed illness.

Thank you for reading and I hope I can get some help, insight, suggestions, and support here, which I do not have anywhere else.
Cherubi

[lyndacarol]

Welcome to ThisIsMS, Cherubi. You have no need to feel alone – you have found us. Although you are not diagnosed with MS, we are happy to share our experiences and thoughts on this disease of MS – each of us is different, with unique ideas that are not necessarily shared by anyone else here.

To your question 3) Which other illnesses could be responsible…? I think that excess insulin (and resulting insulin resistance) could be responsible for many, if not all, the symptoms involving muscles. I always suggest that people ask their GP (or endocrinologist, if they have one) for a "fasting blood insulin test" – this is NOT the same as a glucose (blood sugar) test done to diagnose diabetes.

We are glad to help in any way we can. All the best to you.

[cherubi]

Welcome to ThisIsMS, Cherubi. You have no need to feel alone – you have found us. Although you are not diagnosed with MS, we are happy to share our experiences and thoughts on this disease of MS – each of us is different, with unique ideas that are not necessarily shared by anyone else here.

To your question 3) Which other illnesses could be responsible…? I think that excess insulin (and resulting insulin resistance) could be responsible for many, if not all, the symptoms involving muscles. I always suggest that people ask their GP (or endocrinologist, if they have one) for a "fasting blood insulin test" – this is NOT the same as a glucose (blood sugar) test done to diagnose diabetes.

We are glad to help in any way we can. All the best to you.

Hi lynda
I was asking "which other illnesses are associated with the "mirror o-band pattern"if it is the catagory that my O-Band pattern fits into. Are you saying the insulin resistance can be responsible for the O-Band mirror pattern?

The lab terminology on my oligoclonal banding report is what I don't understand, and the neuro was no help. Multiple bands in both CSF and serum, which banding pattern is this associated with?

[MarkLavelle]

When I received my spinal tap results, it came back with:
MULTIPLE RESTRICTION BANDS IN BOTH CSF AND SERUM; CANNOT DETERMINE THE ORIGIN OF BANDS, CNS or SERUM.

My understanding about bands & MS is that people with MS will usually (90%?) have more bands in the CSF than the serum (blood). Since the result doesn't say anything about a difference between the CSF & serum, I would assume that it's a negative (but not conclusive) result re: MS (The quote from the report doesn't say anything about mirror patterns, and I don't know what you are referring to).

What kinds of doctors have you seen, and where? Have any of them shown any determination to "fet to the bottom of this?" If not, you may mostly need to look for better doctors...

Good luck!

[lyndacarol]

Hi lynda
I was asking "which other illnesses are associated with the "mirror o-band pattern"if it is the catagory that my O-Band pattern fits into. Are you saying the insulin resistance can be responsible for the O-Band mirror pattern?

The lab terminology on my oligoclonal banding report is what I don't understand, and the neuro was no help. Multiple bands in both CSF and serum, which banding pattern is this associated with?

My ideas are unconventional; since there is no known cause for MS, I feel it is my duty to doubt existing hypotheses. Excess insulin is implicated in high blood pressure (hypertension), heart disease, diabetes, and obesity. I suspect it is involved in MANY modern day diseases, including MS and other so-called "autoimmune" diseases.

Insulin is able to cross the blood-brain barrier; in addition, insulin is synthesized in the brain (although literature incorrectly only mentions this ability for the pancreas). One of the accepted markers for MS is lesions in the brain and on the spine. The lesions in the brain are most often periventricular, or around the blood vessels – I think this is due to insulin crossing the BBB and inflicting damage. I have not specifically investigated a connection between a "mirror oligoclonal band pattern" and excess insulin, but I think it is entirely possible. I encourage you to discuss this with an endocrinologist. I doubt that a neurologist would be open to the possibility.

[cherubi]

When I received my spinal tap results, it came back with:
MULTIPLE RESTRICTION BANDS IN BOTH CSF AND SERUM; CANNOT DETERMINE THE ORIGIN OF BANDS, CNS or SERUM.

My understanding about bands & MS is that people with MS will usually (90%?) have more bands in the CSF than the serum (blood). Since the result doesn't say anything about a difference between the CSF & serum, I would assume that it's a negative (but not conclusive) result re: MS (The quote from the report doesn't say anything about mirror patterns, and I don't know what you are referring to).

What kinds of doctors have you seen, and where? Have any of them shown any determination to "get to the bottom of this?" If not, you may mostly need to look for better doctors...

Good luck!

Hi,
I am trying to figure out which pattern in the links below, represents the pattern of my results.
Labs have their own jargon, and so I am trying to figure out my results, which I wrote in first post, which are written differently on the lab report, but reflect one of the pattern categories on the links I listed. Just the way it's written on my report, is in the labs own jargon, so it makes it confusing. One website calls pattern 4- identical OCBs in both or " mirror pattern". I am wondering which pattern my results fall under.

The Pattern which your results fall under can be a big indicator to which differentials could be suspect. There is an association, more or less, in the pattern and the diseases it could indicate. Neuro said MS is low on the list, but it is ridiculous that he would not identify to which o- band pattern my results fit under. See both links, it describes the patterns, just written slightly differently. So that is my question, because the neuro didn't answer it: Multiple Restrictive Bands in the BOTH CNS and Serum, origin of the o-bands cannot be determined (whether coming from CNF or Serum production).

http://www.birmingham.ac.uk/facilities/ ... terns.aspx

http://www.clinlabnavigator.com/oligocl ... n-csf.html

I am being seen at a teaching hospital right now. I don't think any of the neuros ever cared to get to the bottom of it (very quick to dismiss me, make excuses for my symptoms, wow-wish I could make up my own excuses and tell myself nothing is wrong when I know it is). Anyway, I dont see my current as being too determined, but better than the rest Ive seen. The only one who is deternimed is ME. In fact, I had a hell of a time getting the LP ordered, like gosh, it's something someone really wants, unless other tests have not shown anything.


Anyway, if you can make sense of my result and what pattern in the links it might fit under, it would be insightful. I am thinking my RESULTS, the way they are written, sound like a identical/ mirror pattern, but then I wonder if its a Polyclonal pattern...Any thoughts, please share.

[MarkLavelle]

Neuro said MS is low on the list, but it is ridiculous that he would not identify to which o- band pattern my results fit under. See both links, it describes the patterns, just written slightly differently. So that is my question, because the neuro didn't answer it: Multiple Restrictive Bands in the BOTH CNS and Serum, origin of the o-bands cannot be determined (whether coming from CNF or Serum production).

Your second link (ClinLab) makes it pretty clear to me: Failing any indication that your serum & CSF band numbers are actually different, you have "pattern 2," which does not indicate MS.

If you don't accept that conclusion, the only other conclusion is that the tap (and/or the same-day blood draw) was botched, in which case you should ask to have it done again (but it doesn't sound like your neuro would support that).

[cherubi]

Hi Mark,
Not sure what you mean by "accept that conclusion", as I was not really questioning whether this is MS, I was trying to figure out which o-band pattern my results fit into, already knowing that it was not the o-band pattern commonly seen in MS. Thanks for confirming my own thoughts about my pattern. It would be nice if lab results jargon corresponded with the diagnostic jargon info about oligoclonal banding patterns.

If my DR actually did their job and explained which pattern it was, I wouldn't be here on a board asking.
As far as the MS dr is concerned, I am not interested that it was "negative" toward MS, because its POSITIVE for systemic inflammation, I am guessing probably crossing BBB, because I have CNS symptoms in addition to peripheral system(muscles) symptoms. But whats in a name, when its destroying my body. I know someone who has relapsing-remitting MS and shes living a normal quality of life, unlike me. Most important, the pattern I have is a big clue what DRS should be looking for in differentials and not get hung up that its not MS based on everything negative toward MS, instead work on figuring out what else this could be causing systemic inflammation. I hope the MS neuro continues do a workup beyond MS, it is the right thing to do, because there are plenty of nasty diseases just as bad as MS that cause inflammation, which leads to disability.

By the way, where are you being seen for MS in Bay Area and how are the doctors?

I am proud of myself that I went through the tap, because I had a feeling that it would show something abnormal and it did (even if not MS indicated). I don't think I'll be quick to repeat that again, because the results have already validated that there in inflammation happening systematically.

Thanks again for writing back...

[centenarian100]

Having oligoclonal bands in the serum matching those in the cerebrospinal fluid can mean different things. Here are some possibilities.

1) Nothing-not related to disease, a normal variant
2) serum contamination of the cerebrospinal fluid (a spinal tap involves pushing a needle through vascularized tissue, so the sample can become contaminated with blood.
3) A systemic autoimmune disease with central nervous system involvement (can be seen in acute disseminated encephalomyelitis, lupus cerebritis, neurological manifestations of sjogren syndrome, etc)

Based on your post, it seems likely that you do not meet the diagnostic criteria for multiple sclerosis. I know that it is frustrating to have unexplained symptoms, but not having a serious disease such as multiple sclerosis is VERY GOOD NEWS!

It may be that you have a known condition which hasn't been diagnosed yet, or you may be one of the many people with symptoms that modern medicine can not explain. Do you think that doctors have a complete understanding of the human body? Not a chance. You may want to seek a second opinion though if you're convinced that some thing is going on.

[centenarian100]

I should also note that your test isn't necessarily "POSITIVE for systemic inflammation" as immunoglobins in serum are normal.

[cherubi]

Having oligoclonal bands in the serum matching those in the cerebrospinal fluid can mean different things. Here are some possibilities.

1) Nothing-not related to disease, a normal variant
2) serum contamination of the cerebrospinal fluid (a spinal tap involves pushing a needle through vascularized tissue, so the sample can become contaminated with blood.
3) A systemic autoimmune disease with central nervous system involvement (can be seen in acute disseminated encephalomyelitis, lupus cerebritis, neurological manifestations of sjogren syndrome, etc)

Based on your post, it seems likely that you do not meet the diagnostic criteria for multiple sclerosis. I know that it is frustrating to have unexplained symptoms, but not having a serious disease such as multiple sclerosis is VERY GOOD NEWS!

It may be that you have a known condition which hasn't been diagnosed yet, or you may be one of the many people with symptoms that modern medicine can not explain. Do you think that doctors have a complete understanding of the human body? Not a chance. You may want to seek a second opinion though if you're convinced that some thing is going on.

Hi C,
Having identical bands in CSF and Serum is an indicator of systemic immune response, which translates to inflammation, that is the response. There should not be multiple bands in the spinal fluid, even if immunoglobulins exist in the serum as the norm.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

As for my O-band pattern results meeting the #2 pattern criteria of identical bands in both csf and serum, as you can see below link that there are many diseases that can cause this. I was more interested in confirming which pattern mine fits into, because I knew it didn't match the MS indicated pattern.

http://www.clinlabnavigator.com/oligocl ... n-csf.html

So I probably don't have MS, but I do have another SERIOUS disease, and its been getting worse over the last 2 years as I state above. Lupus and Sjogrens for example are very SERIOUS diseases, as they can attack the muscles, nerves, organs and glands. It makes my life and my loved ones hell, not having a diagnosis, because I cannot even try any treatment to stop this or see if anything improves it.

To me it makes sense that something is happening in my peripheral nervous system, muscles and nerves, and the inflammatory proteins are breaching the BBB into my CNS, causing the other symptoms.

I think that drs, in my humble opinion, try to look for the easiest answers, in the box thinking, sad and true from my personal experience. I have tried to "guide" them, because they seem so passive about investigation. Of course, it's not their life or their loved ones life in jeopardy.
But my illness is one of those that will take out of the box thinking and the only person that has done this so far is ME. I will push my current neuro, because I will not be abandoned again. At least my pattern gives clues where to investigate further and that gives me strength to push them more.

Thanks for replying to my post.

[centenarian100]

I read a book a while ago called "the family that couldn't sleep" about an extremely rare genetic disease called familial fatal insomnia which is a rare prion disease (in the same class of diseases as "mad cow disease"). One interesting thing that the author talks about is that all of these patients were originally misdiagnosed with "encephalitis" or "asthenia" or some other retrospectively incorrect diagnosis.

The issue, I believe, is that doctors simply aren't very good at diagnosing and treating conditions that they don't have a lot of experience with. Doctors are effective when they can see similarities in patients and put them into categories.

Hopefully, your symptoms improve and you don't end up having a serious disease.
Best of luck

-c

[Evansgill]

Please please tell me if you ever found an answer to your question. Your description is identical to my own and I am finding the same response with nowhere to go next

[JillMelody]

Hello Evansgill, I'm new here & just joined after seeing yours & Cherubi posts because both of your stories fit mine to a T! And, I am also looking for answers to as WHY am I having MS symptoms if I do not have MS? I don't know if Cherubi is on this site anymore (possibly a diff thread) since I've just come across it & haven't looked farther after seeing your posts. But I'd like to find out more & wondering if you've had any luck getting a diagnosis for anything? I've been so sick for almost 10 years & have had many tests! Several MRI that reports claimed "No Lesions" but last Brain MRI found "4 Lesions - Not New"! So they've been there all along & apparently "Missed" by whoever was reading the MRI SEVERAL of them! 1st spinal tap was NOT checked for ANYTHING MS - As it was SUPPOSED to have been! 2nd Spinal Tap I was told by that Neuro was "Negative" but years later I got my records & found out 'That was a lie"! It was high in Protien! He even had results in a "Volume II with 2 other results"! And my 3rd ATTEMPTED Spinal Tap failed (back is so bad now), rescheduled & had to be done with CT Guided shows "Numerous Oligliconal Bands" in both CSF & Serum! So I'm stuck just like Cherubi as far as getting diagnosed for ANYTHING & seems that you are too! What I do not understand about this whole MS diagnosing is why we must go through all the various tests & to keep coming up without any diagnosis or some type of treatment for relief! I feel as if I've been sucked into a game by some Dr's who keep so much a secret - as if MS is some mysterious thing - a diagnosis to be hoarded even after much has been excluded! Well Evansgill since you only posted that your situation is the same as Cherubs I don't know if you've had the same experiences or wondering about the outcome of your overall treatment from your Dr too but j.i.c. you are I wanted to let you both know, you are not alone & it appears to happen quite often - missed diagnosis for whatever reasons!

[JillMelody]

Oh yeah, since the 2015 MRI that FINALLY FOUND THE 4 Lesions are NOT NEW & have been CONFIRMED to have been there all along in my 2007 Brain MRI, I suggest that everyone be sure to keep your MRI DVD & get a 2nd opinion-reading of it if you are have MS symptoms & unresolved answers or a diagnosis!