Abnormal LP...If not MS then what can it be?

[Tambone]

I am a 41 year old female who has been experiencing numerous MS/neurological symptoms since May 2007. I have a family history of MS - my grandfather had it. I have had 3 clear MRIs (brain 8/07, cervical 9/07 & repeat of brain on 10/08). I had a lumbar puncture on 10/06/08. I was told that all of my labs (about 10 tests in all) were normal with the exception of one called an "MS Panel Interpretation" which shows a component "oligoclonal bands interpretation, csf, electrophoresis" and result of "borderline". I emailed the neurologist (the second one I've seen now) and asked for an explanation as to what this means. I'm assuming that it is a maybe or possibly rather than a negative result. Here's her response:

"All of the labs are nomal except one of the MS studies which came back as borderline. It is not highly suggestive that you have MS especially since all of the other spinal fluid tests are normal. Borderline means that it was not strongly positive but it was not normal either. I do not know why that one test may be abnormal. It is a non-specific test and may not have anything to do with MS."

It sure seems odd that all of the tests would be normal yet the "MS Panel Interpretation" would be borderline. Have you ever heard of this before? I'm suffering from symptoms daily and desperately want to find out what is going on with me. If it's not MS, then what could it be since I was told that the tests they ran would check for other auto immune disorders as well. Here is what the other tests were called:

Multiples Sclerosis Panel, Cerebrospinal Fluid + Serum
Cell Count with Differential, Cerebrospinal Fluid
Glucose, Cerebrospinal Fluid
Cerebrospinal Fluid Protein
Cryptococcus Species Antigen, EIA
HSV (Herpes Simplex Vius), DFA
Varicella Zoster Virus, SFA
VDRL, Cerebrospinal Fluid, Qualitative
Complete Blood Count with Differential
Differential, Manual

They are saying stress/anxiety or that I have a somatization disorder. I don't believe that either of these would cause an abnormal LP. Clearly something is wrong with me.

Anyone have any thoughts or ideas they would like to share?

[Tambone]

Thanks to all of you for your input and sound advice. I sent an email to my neurologist asking if I had been tested for Lyme Disease and low and behold I wasn't. Her response was "have you ever had a tick bite"? I told her that I don't recall ever being bitten by one but wanted to be tested for it anyway. I also requested a Western Blot. She has ordered both tests so I'm going in tomorrow for the blood draw. We'll see what happens and I'll keep everyone posted.

[speechgeek]

HI Tambone

I am also a lurking Lyme Patient on the MS forum and I also agree that you should have lyme/ tick borne illness ruled out. I had every symptom and then some that you had mentioned. I would also push for a western blot.  Remember that if it comes back negative the next question you need to ask is "did any bands come back positive?"  Finally, try to find a lyme literate doc in your area.  

Reading the "cure Unknown" will answer a lot of questions. best of luck and i hope you feel well soon.

Rebeccah

[Quixotic1]

Thanks so much for weighing in on this.  I agree that Tam's symptom list is more suggestive of Lyme or a related infection than it is of MS.

Q

[wonko]

Hi Tambone,

I'm sorry you are experiencing such a combination of symptoms and frustrations with doctors.  I can really relate, as I've been through the same, with all the symptoms you list and more.  I first noticed something was "wrong" around the same time as you state, spring/summer of '07.

I went through a lengthy time of going from doctor to doctor, refusing to give up as my "mystery illness" continued to creep in and take more away from me.  I thought I was tested very thoroughly for all of the MS mimics, but over time, I realized that was not true.

My regular physician, my neurologists (4 in all), and my rheumatologist all assured me that I didn't have Lyme.  I had two ELISA tests, the blood screen for Lyme, that were both negative.  I had a lumbar puncture, and my spinal fluid also tested negative for Lyme.  I never recall a tick bite in my life, and do not engage in outdoors activities.  I also never had the classic "bulls eye" rash, and for about a year my sickness had mainly neurological symptoms that were not typical of early Lyme.  I was never given a Western blot, the more accurate test for Lyme, because it is standard practice to only perform them on patients with positive ELISAs.  I went so far as to request a Western blot, but my physician refused, based on her opinion that I could not have Lyme.

I was told to repeat my brain MRI, which was abnormal but too non-specific for a diagnosis, every 6 months and to hope for the best.  I knew whatever I had was already "full blown," so it made no sense to me that more time was needed.  I had become too sick to work full time, to properly care for my home, and was slowly and painfully declining.  

Though undiagnosed, my physician put me on a 15 day course of oral steroids.  I declined this treatment for months, but finally gave in when I came under too many deadlines at work and felt desparate.  The steroids offered a very short term reprieve, but within two weeks all of my problems returned, and then spread and worsened.

Finally, enough people in my life came forward and prodded me to reconsider Lyme.  Sadly, Lyme is a contested disease.  By that I mean, from how to test for it, to how to treat it, and everything inbetween, there is widespread disagreement in the medical community.  Along with Lyme, ticks can transmit other illnesses, called co-infections.  The presentation, rashes, and symptoms vary, and they too are very difficult to test for.  This further complicates getting a diagnosis and proper treatment, as the co-infections do not all respond to the same antibiotic therapy that Lyme does and cause confusion in symptoms.

In Dec. '08, I got myself to a "Lyme Literate" doctor (often referred to as "LLMDs," these doctors have practices dedicated to diagnosing and treating Lyme in complicated cases).  I was diagnosed with Lyme through an Igenex Western blot and 2 co-infections based on blood work, history, and symptoms.  I've been in treatment for about 7 weeks.  It's been, and still is, a bumpy ride.  But I am improving.

In my opinion, your list of symptoms and test results thus far raise a red flag for tick bourne diseases.  If you want more adivce, please check out the Lyme forum here on MedHelp:

http://www.medhelp.org/forums/show/148

My regular physician's strong denial that I could have Lyme, along with the *completely inappropriate* use of steroids, confused me and caused my infections to worsen.  The longer these illnesses go untreated, the longer and more complicated the treatment becomes.  It was only through my LLMD that I made progress with my health.  

I would also urge you to watch the trailer for the documentary "Under Our Skin" and to look at the online material for "Cure Unknown" by Pamela Weintraub.  Both have websites that you can easily find by searching the titles.

Take care, and be well.

[Tambone]

Hi Bio;

Thanks for responding to my post. I tried to give you all a short synopsis of my current situtation but there is actually more to my story. My GP and the first neurologist did actually refer me to a psychologist. I was in an unhealthy, abusive marriage for 15 years so I left my husband when my daughter was just 11 months old. I was in agreement that I could use some counseling so I saw a therapist once every 3-4 weeks for a while. While it certainly felt good to vent emotionally, it didn't appear to be helping with my physical problems. The therapist thought I was suffering from GAD but obviously couldn't guarantee that the disorder would be responsible for my long list of symptoms. She prescribed Celexa which I took only a couple of times but stopped taking due to a severe reaction. She suggested trying another anti-depressant but I declined as I have vertigo and have heard that they often cause dizziness. I also took a 4 week "calming class" she recommended that didn't seem to do anything for me. I stopped seeing the therapist early last year and haven't been back since.

One of my co-workers brought up the possibility of fibromyalgia. I don't know much about it (or it's symptoms) but from what I've heard you have pain when pressure is applied to trigger points which doesn't sound like what I'm experiencing. Also (fortunately) I do not have extreme fatigue. At this point I am ready to consider anything. Maybe I should push my GP and ask for a referral to a rheumatologist.

[doni54]

Hi Tambone, and welcome to the forum.  This is a great place to be when you are going through the process of trying to get some answers.  There are many of us here who are undx and searching for our answers also.

I agree with what everyone else has said and like bio, it really urks me when a dr puts it all down to anxiety or "it's all in your head"!!!

Take care and I look forward to getting to know you better.

doni

[sllowe]

Hi Tambone,

Adding on a big welcome to you Tambone!

I hope you like it hear and look forward to seeing you around.

I am impressed with the proper ordering of the spinal fluid testing. It's not always ordered properly.

Do you acutally have the results in hand? Are you quoting the interp? If you feel comfortable to do so, please post the details of it.

See you around!
-Shell

[biowham]

Tam, has  anyone said anything to you about fibromyalgia? Or about sending you for a rheumatic workup? If your MD REALLY THOUGHT you were somaticizing, that MD should have, by standard, sent you for a psychiatric eval. Not having done so means that MD has just tossed you in a trash heap because of laziness. Your second MD is ignoring all kinds of possibilities here in just waiting, given your symptoms. With your joint problems and that "borderline" spinal result, at the very least, I'd think you need a rheumatology workup.

It is true that diffuse complaints can sometimes be a manifestation of somaticization, but again, if that MD truly thought that, she should have taken steps to address it. If she thought that your list of symptoms were the result of stress or anxiety from being the single parent of a preschooler, she SHOULD HAVE DONE SOMETHING FOR YOU.

Sorry...this stuff really really irritates me. Like it's casual for stress to induce symptoms and you should just say "stress" and then pack off the patient as though it's all taken care of.

And for the record, yes, having a preschooler and being a single parent is stressful, but millions of people live that life without somaticizing their stress. That should be the FINAL diagnosis considered, not the first.

Bio

[Quixotic1]

One band would be sufficient auxillary evidence in the minds of a good neurologist.  It is just a supplemental test.  In the face of convincing history and physical, supported by an MRI, many docs now would not even do an LP.  A single band is not as strong a piece of evidence and would not be enough to sway an iffy diagnosis, but would be plenty to give the info that some immune inflammatory process is going on.

In the normal people  who have one band, the scientists often theorize that there has been some prior mild viral infection that has caused it.  Even when it is seen in healthy people they suspect some possibly prior immune inflammatory process.

I had only one band, though I did have an elevated IgG Index.  My neuro felt that although it was not a "slam-dunk" it was all sufficient to call it MS.

Quix

[Tambone]

I can't thank you enough for the prompt response and words of wisdom. I especially appreciate the information on o-bands as they were never explained to me by the neurologists. As far as my symptoms go, they are not constant. They occur intermittently and randomly throughout the day. Some days are definitely better than others but I can't recall a single symptom free day since 5/07. Here is a comprehensive list of what I've been experiencing (please bear with me as I realize that the list is very lengthy):

Vertigo (not as in the room spinning, more like a boat rocking to/fro or back/forth)
Blurry/cloudy vision (my eyesight is fine - I do not wear glasses)
Headaches/sharp pain/pressure in head
Occasional waves of nausea
Shaky hands/legs
Weak legs
Tingling numbness (face/hands/feet/arms/legs)
Hot/cold sensations (legs/feet)
Occasional vibrating legs/feet
Pain down one side of neck, underarm and arm/hand
Stiff/painful joints
Lower back/flank pain
Skin sore to touch (mainly in arms)
Twitching (face/legs)
Occasional bad/chemical taste in mouth
Hearing fluctuation (not loss, hearing amplified at times)

My GP has run numerous lab tests that were all deemed normal (with the exception of a Vitamin D deficiency).

The first neurologist feels all this is caused by stress/anxiety (as I am a single parent of a preschooler). She also told my GP that she feels I have a somatization disorder. She didn't see the point in follow up MRIs so I asked to be referred to a second neurologist (who agreed to the last MRI and LP). This new neurologist says all they can do is 6-12 MRIs to see if any lesions appear in the future.

I'm really at a loss and don't know what to do at this point. I obviously don't want to have MS but I just don't know what else it could be. Could it really be stress and anxiety? My symptoms are VERY real and making my life so miserable.

[Heather3418]

After 7 years of having MS, I finally submitted myself for an LP. (This was 5+ years ago) It came back with only one band, but the MS Specialist said that this was MS due to my history of relapses and remissions and lesions in the brain and spine.  

Any idea why I would have only had one band and should this test ever be repeated to make SURE this is MS?

Heather

[Quixotic1]

Hi, and welcome to our forum, our little Light Side of the MS Moon.  I see that you have been over on the Neurology forum with most of your questions.  I invite you to tell us about what you have been going through  for almost two years.  What are these symptoms that bring MS to mind?

But, I will try to tackle the question you asked about your LP results.

I suspect from the wording of the Lab Result that you had just one Oligoclonal Band.  This is a test for large amounts of the same type of antibody that has been produced in the CSF.  In MS a "positive" test is 2 or more bands.  Borderline would be 1 band and negative would be zero or one band depending on how the lab reports their results.

Studies looking for oligoclonal bands in large numbers of people have shown that a small number of completely healthy persons have one O-band in their CSF.  One band can also be seen occasionally in other neurological diseases and in people who have or recently had central nervous system infections.  

One O-Band is not a strong pointer toward MS.  There are too many other conditions that can cause it and too many healthy people with no symptoms can have one.  So I see why the doctor is not jumping on that single result as evidence of MS.

The other result of the MS panel that can point toward MS is something called the IgG Index which is a measure of an increased amount of antibodies being produced in the central nervous system.  But, I have never heard of the IgG being referred to as "borderline," just positive/negative.

Jen is correct.  A negative LP does not rule out MS.  If your symptoms and exam are very suggestive of MS, then a good neurologist will keep one O-Band in mind during the workup.  

Having repeat MRIs that are negative for lesions makes MS less likely, but not impossible.  As Jen mentioned above, ideally you would not hang your hat on negative MRIs unless they were done on the higher strength MRI machines.  1.5T is the most common, but it still misses lesions that the higher 3T machines pick up.

Having a grandparent with MS raises your risk of MS, but only to 1 in a few hundred.

Why don't you stay and tell us about yourself?  We have big ears and all the time in the world.

Quix

[Lulu54]

according to wikipedia, positive o-bands are found in 83-94% of all MS patients, leaving a pretty significant number of MS patients who don't have a positive response on this test.  

O-bands can also show up in your CSF if you have encephalitis, meningitis, or Guillain-Barré syndrome.

I believe it takes 2 or more o-bands to be considered positive, so perhaps you had just one?  That's just my very uneducated guess.

My best, Lulu

[jensequitur]

A positive LP can help lead the doctor toward a diagnosis of MS, but a negative LP does not exclude a diagnosis - if that makes any sense.

What was the strength of the MRI?  Typically 1.5 Tesla or better is recommended.