MS diagnosed by spinal fluid

I was diagnosed with MS 12/07.  I only had 2 big episodes in 7 years, 1 small unchanged lession, lots of numbness, tingling, balance problems and most annoying problems with my thinking and memory.  My spinal fluid result is what finally caused the Dr to diagnose me with MS.  My question is....Has anyone else been diagnosed with MS with one or no lessions and a positive result on the spinal fluid?   I have read that depending on the area of the lessions, causes the symptoms.  I can understand the numbing and tingling ect, becuse of where the lession is on my spine, but I don't understand the problems I'm having with my thinking and memory.  Could the spinal fluid be causing the the troubles I'm having with my thinking and memory?   I'd appreciate any input.  Karen

[mae1]

sorry to here of your dx.  I had just the oppeset, I have 15 lesions on my brain but normal spinal tap. from my understanding karen you can have lesions on your brain that just havent shown up on the mri yet. I have read that many different places.
are you on treatment yet?
april

[wyfrog]

Yes, I am on Copaxone.  I have been on it about 2 months.  It's ok, some side affects.  I am just so confused by all this and the strange things happening to me.  I am most upset by the stuff happening with my thinking and memory.  There is a lot of information out there, but sometimes it seems to be conflicting.  I hope things go well with you.  Thank you so much for responding.  kare

[sllowe]

Hi Wyfrog,

Welcome.  I'm so sorry you are having so many problems.  It's so hard, but you've come to the right place.  There are lots and lots of threads I think will be helpful to you.  We discuss a lot of things here, so poke around, and get familiar with us - we're here for you.

Are any of your lesions in your spine?  There sure is a lot of conflicting information out there, so please be careful.  I had a lot of problems with walking, talking, etc., and the Dr told me it was consistent w/the lesion in my spine.  

I know this doesn't help you very much right now, but wanted you to know you are in good hands here, we have a heck of a support and information network here.

be well,
SL

[Rena705]

Hello wyfrog and Welcome to our Forum!  I am so sorry for your diagnosis of MS and the problems you are subsequently having with memory and thinking.

I have gone back into some past information that was written up by our greatest help...her name is Quix and she has MS and is a retired physician.   You seemed to be a little confused as to how a diagnosis can be made with the LP results and yet having no lesions on the MRI.  The following is an explanation of the McDonald Criteria by which all physicians universally are to diagnose MS. (Some of them are wont to not follow it too closely, however, you fit the criteria just fine for a diagnosis)


The McDonald Criteria

***************************************************************************
FIRST (& easiest) SCENARIO:

If the person presents with a history of 2 or more attacks/relapses which are consistent with MS  AND has 2 or more objective lesions on physical exam  which indicate disease of the CNS white matter (like nystagmus, + Babinski, spasticity, Dysmetria - something that can be documented by an examiner) THEN THERE IS NO NEED FOR ADDITIONAL DATA TO MAKE THE DIAGNOSIS.  In this situation the diagnosis of MS can be made without any MRI lesions.   In reality, it seems few neurologists are comfortable with making the diagnosis on History and Physical Exam alone, but they could!  The panel does recommend that an MRI be done to exclude other possible diagnoses

********************************
SECOND SCENARIO (also not too hard)

If there is a history of 2 or more characteristic attacks separated by at least 1 month (the time requirement), but there is only ONE CLINICAL LESION, that is, “one” abnormality on exam:
        ****then further data is needed for the diagnosis, to show the spread of disease in “space.”

1)  Abnormal MRI - This uses the complicated table (yuck)
OR 2)  Positive CSF (elevated IgG Index OR  oligoclonal bands in CSF, but not in serum) AND 2 or more lesions on MRI
OR 3)  A further clinical attack or relapse involving a different site.
OR 4)  Abnormal Evoked Potentials  (delayed, but well-preserved electrical wave form) and two or more lesions on MRI
***************************************
THIRD SCENARIO (diagnosis depends on appearance of new lesions or a new attack=TIME)

If there is a history of only 1 attack/relapse (no time spread) and there are at least 2 objective clinical abnormalities on exam (dissemination in space established)
**** Then further data is needed to show the spread of disease in “time”
1) Abnormal MRI - (I’m going to be vague here)This is basically a repeat MRI , at least 3 months later needs to show a new enhancing lesion or a new T2 lesion.
OR 2) A second clinical attack

*****************************************
FOURTH SCENARIO (here it gets hairy)  One Attack and One lesion on Exam - This is called a MonoSymptomatic Presentation
                  ****  Need to satisfy both the time and space requirement
                            Space -
                                 1) Abnormal MRI - the doc starts counting lesions
                                 2)  Positive CSF, + 2 or more MRI lesions

                              Time
                                  1)  new MRI lesions >3months later
                                  2)  Second clinical attack

********************************************************
Right now it seems that the most difficult question on the forum is what relationship there is between lesions seen on the MRI's and whether they are causing the problems that people have, their symptoms and their signs.  Too many doctors and neurologists and people try to draw conclusions about this.  It is probably the greatest pitfall in understanding the disease of Multiple Sclerosis.

Please go on to the next post Karen...there is more information but I couldn't fit it all on one post!

[Rena705]

The following is an explanation as to how the lesions on the brain relate (or do not relate) to lesions on the brain...I think that it will help you immensely to understand what is going on in your case!

THE BRAIN

First, lets talk about the BRAIN.  Remember that about 90% or so of our brains are "unused."  That means that we don't know what those areas do or might do if they are damaged.  ALL of the scientific articles are clear that the majority of MS lesions in the brain are not "eloquent", that is, they don't "speak up" with specific symptoms.  No good MS Specialist is going to try to map the lesions and the symptoms that are showing up in the patient.  It is almost impossible and it is a waste of time.  It is well documented that some people with many, and severe symptoms may have few visible lesions.  And some people who are diagnosed when they have just one symptom may have a whole brain full of lesions which had never before "spoken up."

Now, some lesions can be big enough and in known active areas and we can recognize that they cause a specific symptom.  But this is the exception, not the rule.  MS "tends" to cause lesions within a characteristic pattern, but knowing this just means that when you look at a HUGE number of people with MS and plot their lesions, the majority of lesions will fall into this pattern.  ANY ONE person or any person with just a few lesions may have them occur in any white matter location.  .  Even people with a "characteristic pattern of lesions" will have some that don't fall into the perfect "zone."   Please reread those last two sentences.

The more the lesions follow the common pattern, the easier the diagnosis and the easier the job of the neurologist.  It's those people with suggestive symptoms and suggestive abnormalities on physical exam but WHO HAVE NO LESIONS, VERY FEW LESIONS, OR LESIONS IN LESS USUAL PLACES that will have a tougher time with the diagnosis (if they have MS).  

Secondly, all good MS doc's will tell you that they believe that many brain lesions are still invisible to the MRI.  So we know that there are some lesions that can't be seen which can still cause symptoms.  So that makes drawing conclusions IMPOSSIBLE between where the lesions in the brain sit and what the symptoms are.  But, there are some generalities, like the one I mentioned to Moeck this morning.  Some researchers have found a statistical relationship betwee frontal lobe lesions (which is not one of the commonest places) to the very debilitating fatigue.

The point to take home:  Most lesions seen in the MRI of the brain do not correlate well with the problems the patient has.  A good doctor will not try to tell you different.  And you shouldn't spin your wheels trying to look up mapping of the brain - unless that is something you would do anyway for giggles.

THE BRAINSTEM AND SPINE

The nerves in the brainstem and spine are all "eloquent."  They drive the functions and the movement of the body and they relay information from the body back to the brain.  A small area of damaged myelin in the spine is "more likely" to cause a direct symptom or problem.  Spinal lesions are a little less common than brain lesions, but more directly connected (in an obvious way) to our disease.  But, also many spinal lesions are still invisible.  They are also harder to get good clear MRI images on.

WHY DON'T ALL DOCTORS USE THE NEWER HIGH POWER MRI MACHINES?

For one thing, most centers that do imaging don't have the new machines yet.  Many insurance compaines will not cover use of the new machines if you go to special center to get one.  They are still way more expensive.

Remember that the vast majority of the 400,000 people with MS in the US and the UK were diagnosed using the older machines.  For the majority, the diagnosis is not as elusive as it is for the people like us whose bodies decided to be stingy with what we show.  We are the tiny minority.  Some of us don't have MS.  We have to devise workable strategies to get TO the doctors that understand how sneaky this  (and similar) diseases can be.  We have to know when a doctor says, "those two little lesions don't explain your symptoms," we need to look for a doctor that knows more about how MS lesions speak up.  And that knows more about how to proceed with the work up when the MRI doesn't "fit", but everything else seems to.

Yes, the T3 machines show about 25% more lesions in back to back tests (done without contrast).  They also seem to be better at clearly imaging the spine.  When the person presents with a history and findings highly suggestive of MS, but routine diagnostic MRI is negative, then use of the T3 makes sense, if it is available.

Please go forward to the next post Karen...I have more information but ran out of room on this post ok?...............

The following should explain somewhat as to why you haven't had any lesions apparent on MRI:

[Rena705]

The following should explain somewhat as to why you haven't had any lesions apparent on MRI:

The Life History of an MS Lesion

MS does it's damage by causing the nerves in localized areas in the brain and spinal cord to lose their protective sheaths, called myelin.  At first, when the myelin is being attacked, the body brings a higher blood supply to the area to fight the attack and the area becomes iswollen and inflamed.  These areas now become "lesions."  At this point, when they are inflamed and blood engorged,  they are called "active lesions."   At first the nerves, themselves,  haven't changed much and they appear (and have the same density) as the healthy areas around them.  The body attempt to repair the damage that is being done and sometimes these areas re-myelinate.  They may disappear from the next MRI.  They aren't perfect in their function, but the area may return to a normal appearance.

If the nerves do not remyelinate and the damage continues, for a long time the lesions sit as scars.  These scarred areas have damaged and dying cells in them, the blood supply shrinks, and the areas become more dense  - more dense than the normal brain around them.  These are the classic MS plaques and are considered old lesions. They show up as the bright areas most of us have seen in pictures and on our films.

If the attack on the myelin sheath is too strong for the immune system to repair, more and more myelin disappears and the area of nerves eventually dies.  Then it contracts and scars.  The blood flow is decreased to that area and the body tries to reabsorb the dead area.  It becomes "less dense" then the surrounding normal nerve tissue.  After a longer time - probably years - the scar can reabsorb completely and the area becomes "empty."  It's called a black hole.

How the MRI Shows These Different Stages of MS Lesions

When you image these lesions with an MRI you can see different things, depending on the technique, the age (stage) of the lesion, the power of the MRI, and whether contrast is used.

The first MRI image is done without contrast.  This technique will show old lesions that are big enough to be seen by the power of that MRI machine.  WE KNOW that many lesions in MS are too small to be seen.  If the newer, more powerful MRI with a 3 Tesla magnet is used many more lesions will be seen (by at least 25%) than on the older 1.5 Tesla machines.  The classic old, scarred, mature MS lesion is a little bit oval, will have well-defined borders and will be in the white matter.  Characteristic places (but not the only places) are subcortical, peri-ventricular and in the corpus callosum.  The classic MS lesion will also have it's long axis perpendicular to the ventricles of the brain.  Also, important and very symptomatic lesions are found in the brainstem, the cervical and the thoracic spine.  The spinal cord ends at the bottom of the thoracic spine, so there is no such thing as a lumbar spinal cord lesion in the normal spine.

The  scarred lesions will show up as light, bright areas.  These are the classic, MS lesions or "plaques."   But, with just the regular MRI image one can NOT say if it is old and dormant or if it has active inflammation in it.

Now the very old, scarred ones that have been reabsorbed will show up as a black (empty) space or black hole.  If there are many of these empty areas the brain will contract around them eventually and show up as a loss of brain volume.  This is also know as brain atrophy.  This is particularly seen in the progressive types of MS.  In brain atrophy there will be an increased space between the skull and the brain.  Also the deep folds in the brain will appear widened.  

**However, a newly active MS lesion may not show up on a regular MRI because the area of nerves, though inflamed, is still pretty much intact and has normal brain density.  On the MRI it will look like normal brain.  Without contrast it won't show up and will be missed.**

When the next phase of MRI is done the contrast is in the blood vessels.   Anywhere the blood vessels are more dilated than usual,  bringing more blood to the area, as in inflammation, the areas will "highlight"  or "enhance."  They show up as even brighter than the brain around them and brighter than an old, scarred lesion.  So new lesions will show up as "enhancing," or "active".  Also, older lesions, that have undergone a new attack right around them (also called reactivation) will show an enhancing rim or ring.  When you compare the regular MRI to the Contrast MRI you can see this reactivated, old lesion.

That's how some reports can call active lesions or some report no newly enhancing lesions  (these say the same thing).  Also since some new ones heal they can be compared to old films and show they disappeared.  In addition, between different sets of MRI done after a time has passed, the radiologist can see an increase in old and in new activity.

Please ask question where I haven't been clear.


Karen...I hope that some of this information is helpful to you and should you have any questions about it please don't hesitate to ask ok?  Like I said, we are here to try and help make this journey a little more pleasant and if nothing else, I am sure you will make some new friends here with no strings and no demands ok?

Please keep in touch with us...we really need to hear how you are making out and you can probably offer some further support to someone else and it is amazing how therapeutic "paying it forward" can be.

Lots of Hugs,

Rena

[wyfrog]

Thank you sooooooo very much for the information.  It is starting to make more sense to me now.  I am going to share it with my family.  Sometimes I feel like others may feel like I'm "making up" symptoms or the fatigue.  I am just trying to understand whats going on.  Thanks again.  I feel like I have found a really good resourse with this site.  Karen  

[Rena705]

Honey....I think we have all gone through the problem of thinking that others are feeling that we are making up the pain and cognitive problems we are having.  I think a lot of this is due to the long road we all have to travel to find a diagnosis and how different all of our symptoms can be and we start to doubt ourselves as well!  

This is good information to show to your family and if they still are having problems understanding, consider contacting  your local MS Society Branch and if you live close by you could go to a support group meeting taking some of the family with you or call them and they will be happy to send out any information that you request!

I wish you luck with your diagnosis and I hope that your neurologist is going to get you started on one of the disease modifying drugs as soon as possible.

If you have any other questions Karen, don't hesitate to ask ok?  We are here for you and if I can't answer it and if I can't find the answer, I will find someone who can ok?
Please stay in touch and let us know how you are doing ok?

Lots of Hugs,

Rena

[Quixotic1]

Well, you got a lot of info here.  I'm just going to address your original question.

I was diagnosed with one, lonesome, measly brain lesion, but my MS Specialist was pretty sure I had MS from my exam which showed a great deal of pathology in my spine, even though the initial 3 MRIs on my spine were clear.  The exam was proof positive, even though the MRI was "normal."

However, when my spinal fluid was positive for an elevated IgG Index & 1 O-Band my doc said he was more than 90% sure and began me on Avonex.

I still only have that solitary, puny, sorry excuse for MS lesion in the brain, but on a higher power MRI (just after the diagnosis) my spine showed 6 lesions.  This cinched the Dx.

So, a good doc who is willing to put the whole picture together can, indeed, make the diagnosis with an MRI that is less than conclusive.  I get soooo angry when I hear of neurologists that won't make a diagnosis without "X" number of MRI lesions.

I also did not have a good history of attacks.  I had progressive neurologic deficit, punctuated by one clear attack only.  He was still that sure.  He didn't even call it a Clinically Isolated Syndrome.  Plus the mimics had been thoroughly ruled out.

So, the answer to your question is "Yes."

Quix, MD

[young at heart]

WELCOME TO OUR CYBER FAMILY.

I WAS DIAGNOSED WITH MS OUT OF THE NORM.

I HAD BRAIN AND SPINAL ATROPHY,PLUS EVOKED POTENTIALS WERE ABNORMAL.THE LP WAS BORDERLINE ABNORMAL.

MY NEURO WASN'T A LESION COUNTER AND HE RECONIZED THE NEUROLOGICAL DEFICITS.

THIS IS A GREAT FORUM,THATS OVERWHELMING WITH STRENGTH AND SUPPORT.

T-LYNN

[Caz61]

I am a 47 year old lady.have quite a few health problems at the mo! I had a B.s.e.r.test which had significant loss on left side of brain.I only went to get a new hearing aid for my tinnitus.The doc sent me for an m.r.i. scan and told me he was convinced i had an arnold-chiari malformation.I was worried to say the least! My scan came back that i have an ischaemic brain lesion in the medulla brainstem.He mentioned the possibility of m.s.I am awaiting to see a neurologist at present time.I have had extreme fatigue for awhile now but joke that its down to my tablets!The tabs i take are for tri geminal neuralgia.I am beginning to think it could all be connected.I feel so ill sometimes that i get sick of telling my family and think they get fed up with hearing about it.I have noticed to the point that i forget things and get mixed up alot of the time.I feel quite embarassed that am afraid to say anything.I can ask a question then 30 mins later i ask again as i forgot the answer.I have got some understanding to what maybe happening to me by reading the forum.I live in United Kingdom and thanks for listening.

[Quixotic1]

Hi, Caz, Welcome to the MS Forum.  You happened to post in an older discussion that is not currently active, but I wanted to greet you and invite you to post on the main page of the forum.  If you will cut and past this address into your address window your will arrive at our main page.  There I invite you to tell us all about the Trigeminal Neuralgia, the tinnitus, the BSER, the fatigue and any other stuff that you are starting to think might be related.  Here is the link to our main page.  or you can go to the bottom of this page and click on "Return to Forum."

http://www.medhelp.org/forums/Multiple-Sclerosis-Support/wwwboard.html

People won't find you here and you deserve a discussion of your own.

I am Quix, I am a physician who is retired from practicing Pediatrics and I also have MS.  I try to answer some of the medical questions here, but we have dozens of people from all over the world to help support, share experiences, answer questions and just be helpful.  We all knowm when you don't have a diagnosis, but you do have pain and severe fatigue, that family and friends don't see what the problem is.  Most of us have been through that.

Have you been reading this forum?  For how long?  I'm glad you jumped in.  As you are becoming aware, brainstem lesions (probably NOT ischaemic), fatigue, Trigeminal neuralgia, memory issues are all common in MS.  But, there are a lot of things that need to be ruled out.

When do you think you will be able to see the Consultant Neurologist?

We can help you prepare for seeing the Consultant.  

Welcome again,

Quix, MD

[thewife072]

my husband is awaiting an appt with the neurologist after his Cervical MRI showed white patches.  You said you could help prepare CAZ for the consultant. Would you share with us too?
Concerned wife

[Lulu54]

Hi thewife,
I sent you a message but in case you don't know how to find that I thought I should also post here.

Please take your question and start a new conversation (post a question - green button at the top of this page)  Many people don't read these old threads and your question will probably get *lost.*

We'll help you figure out what you and your husband need to do next to prepare.  -
I'll look for your new conversation thread.

my best,
Lulu

[Raine123]

Hi All, I've just come across this site, but notice that no-one's written anything since last year.  I have PPMS - diagnosed a couple of years ago.  Is there anyone out there who has anything positive, or helpful to say with regard this "monster" that's putting up one hell of a fight on my body?

Hopefully -
Lorraine

[Critta117]

Hi there I'm hoping for some answers for three months I was really ill with chronic head aches that would not respond to pain killers I had vertigo and was unable to walk I was off balance I could not concentrate and was in pain. I could not drive the car I spent five weeks just lying there had nausea also. When I bent down or strained at all my brain would thump. I had no fever or any other flu symptoms after that subsided when I stood up I would get a chronic pain in my neck and my jaw would spasm. I went back and forth to several doctors until one sent me to a specialist. I have has a MRI and it showed nor lesions on the brain but lesions in my neck although I have several m.s symptoms they said I don't have m.s because I only have lesions in my neck??? I'm so confused I don't understand what's happening to me can't get any answers they did say if I have another episode similar to that one I could have a spinal tap? I just want to know what's wrong with me. I am so tired all the time and am in pain. I feel much better than I did During the episode but not a hundred percent can Anybody help me I'm based in Ipswich qld australia

[SarahL2491]

you've posted to a very old thread and many willnot scroll down.
perhaps start a new thread and try to break up your post into paragraphs
as many have trouble with long threads.

you would need much more testing to rule in/out MS, lots of blood tests, etc.  more than 20 other diseases mimic MS.
good luck

[SarahL2491]

my reply was to you, Critta117