MS diagnosis without lesions

I am curious how many on the forum have had a diagnosis of MS without lesions being present on the MRI.  In my case I had a "monophasic central nervous system demylenization" about 17 years ago.  It presented as double vision upon wakening one morning, accompanied by some left sided paresthesis.  MRI and LP were both negative for any of the normal markers for MS.  The double vision and numbness and tingling resolved over the course of about three months.  Over the next seventeen years I had several episodes of numbness and tingling, limping to the point of dragging my left foot, and issues with vertigo.  I had several MRI's during that time, all negative.  I even had a diagnosis of "Probable MS" at one point, but could not be confirmed by MRI.  Last month I again woke up with double vision along with a serious balance and coordination component.  I had two CT scans, three MRI's (with and without contrast) and was admitted for a three bag course of IV steroids.  After physical examination and learning my history, the attending physician diagnosed me with MS and sent me home with an order for Avonex.  At my followup appointed two weeks after discharge, the neurologist I saw said that given my age (60), and the fact that I noticed the left sided numbness and tingling once I got home from the hospital, he wanted some more MRI's to rule out having had a minor stroke.  Those were completed two weeks ago and I go in next week for the results/next followup.  I am now nearly seven weeks into this "exascerbation", with little or no improvement in the double vision, but improvement in the balance and coordination area.  All of the other mimics have been tested for and ruled out.  Any thoughts on my situation?  Any things I should be asking when I go back for the next followup?  Thanks in advance!

[Karen99]

Hello.  Here's a link to a recent thread that you might find of interest.  

http://www.medhelp.org/posts/Multiple-Sclerosis/Can-You-Can-Have-MS-without-MRI-Lesions/show/292785

I know nothing about the topic of no lesions but I can relate to the double vision stuff.  That is what got me into a neurologist and a diagnosis - with a couple brain lesions.

Let us know how your follow up visit goes.

[Quixotic1]

Welcome to the forum!  I'm sorry you are going through all of this, but we have heard your story overt and over again.

Okay, yes, you are 60.  So what?  It does bring in the spectre of ministrokes if you have any of the risk factors like family history, high BP, high lipids, migraine disease, but it appears to me that your new neurologist is not looking at the whole picture.  Now, is this the same doctor that diagnosed MS?  

If it is the same one, then I give him some credit for being thorough.  If it is a different doc, then let me put your history together again.

17 years ago you had a clear demyelinating episode - double vision and lt weakness - work up neg

Between then and now SEVERAL episodes of vertigo, left-sided weakness (sometimes severe) - work up neg

This time you had double vision, with ataxia and problems with coordination.

If THIS EPISODE is due to ministrokes, then one would have to assume you have been having ministrokes since the age of 43 (pretty young).  So, I would assume the current work up is aimed at looking for those MS mimics which involve blood clots.  So he would send a wart-load of blood tests for things that make the blood clot too easily like Anti-Phospholipin Syndrome (Hughes Syndrome) and related beasts along with a cardiac test called a "Bubble Test" to see if you are flipping little clots to the brain through a hole in the heart.

If this is the aim of the new testing, it is appropriate.  ALL better reasons for the problems the patient has should be ruled out.

But, the doctor whould be looking at this episode "in light of all the previous and similar" episodes while looking for a diagnosis.  Just looking to see this time if you had a stroke seems silly.  What is he saying about ALL the attacks you have had?  They have to be explained, too.  

Also, sometimes the mimics have to be looked at extra hard and redone.

Now, I firmly believe that there are a small number of people out there who take decades to show with the proper lesions.  It makes MS darned hard to diagnose, but the McDonald Criteria do NOT require that the MRI show lesions.  It just recommends that if the 2 attack and 2 separate lesion criteria are fulfilled that doing an MRI is desirable.  

I was diagnosed with just one lesion in my brain which had been deemed inconsequential.  Later a higher power MRI showed 6 lesions in my spine.  So, in a sense, I was diagnosed with what was repeatedly called a normal MRI.

At the visit for the results, see what this neuro says.  If he rules out MS on the basis of the normal MRI, you can point out the National MS Society and several studies stated that a small percentage of people have a negative MRI decades into their disease.

Ask how he explains the mulitple episodes - all of which are consistent with demyelinating attacks.

Ask what would be worse - failing to treat MS that is there or treating and possibly being wrong, but the patient knows there is a small chance that the diagnosis is wrong.  Tell him what "your" preference would be as the person who might get help versus twisting in the wind for another decade.

Ask what other entity could "possibly" cause this classic pattern in you?  Ask if the Anti-Phospholipin Syndrome or other clot disorder like Patent Foramen Ovale have been ruled out.

There are other auxilliary testing that can be done which are helpful only if they are positive.  These would be the evoked potentials and a repeat LP.  Personally, I think you make all the criteria needed to diagnose with MS.  I think the doctor in the hospital was right - IF the clotting mimics of MS have been looked for.

There is a Health Page in which I tried to explain the McDonald Criteria.  It is horribly long, but if you read it - as you get to the end you will see that you fulfill the "First Scenario" for diagnosing MS.  This might help you if the new neuro backs off the MS diagnosis.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

We have another member here, essdipity, who is in her late 60's and went through much of what you are going through (though she has lesions) - but I mean with the age thing.  I'll give her the heads up.

Quix

[Udkas]

So you do really believe that some people can take DECADES? before their lesions can show up, if that is true then MS is not off the table for me yet?  I still wonder because of the ON, the palor in my discs and the slits in my nerve fibre, I plan to tell my neuro what the ophalmologist  had to say about my eyes when I go next. Hmmm


Sdsam, I have gone almost 15 years now without any lesions showing on MRI, I was given a diagnosis of MS but then it was taken away due to my repeat clear MRIs, current neuro has almost ruled MS out for me and says it's Transverse Myelitis that is reoccuring but I still have no evidence of this either (well at least not on MRI.)

I find it interesting that you have been diagnosed with MS although your MRI was normal, I always thought you had to have two lesions, see I learn something new everyday.   I had weakness too on the left but not like my whole side..  Sounds like you have a good Dr, I hope you stick around and keep us posted as I am very interested in your story.

Take care,
Udkas.

[sdsam]

Thanks for the quick response and informative reply.  The neuro I saw on followup was not the same doc that attended me in the hospital and did the dx.  But coincidentally, when I was worked up by ENT for the vertigo issues, he was the neuro I was referred to.  The impression recorded by him at the time stated "highest probability for explanation is that the patient earlier had some demylenization in the pontine region causing INO and hemisensory loss in 1992, and that there is some residual dysfunction that is becoming more notable with aging (56 at the time)".  I don't have a firm sense that he is totally backing away from the MS dx, just wanting to rule out the stroke issue.  One thing I am not sure of is whether or not the MRI's examined the spinal cord.  I have read your earlier post when you talked about finding the lesions in the spinal cord.  I think the discharge dx when I left the hospital was kind of a relief.  Like many others, I sort of felt like I was maybe a hypochondriac with all these things going on that no one was able to explain or give me a clear dx.

[Quixotic1]

You definitely belong here with us.  Yes, when I got my Dx, if my sister had not been in the ICU I would have held a Diagnosis Party!  I was more than relieved.  I was jubilant.  Of course, a month later, when the bloom was off the rose, I was p!ssed.  I had only had symptoms for two years.

Well, I can't find fault with the desire to be very thorough.  But, focusing on this episode only as being from a stoke is a bit nonsensical.

Ask anything you want and we'll try to be helpful.

quix

[sdsam]

I saw my primary care provider today and shared with her what has been going on with me.  She called up the MRI results from the second series on January 6 and reviewed them, no signs of a stroke (as I had expected),  I go to see the neuro tomorrow to get the "official" results.  I obtained a copy of the MRI report, and this is what it had to say:  "MRI, Brain MR-Angio - There is normal flow relanted enhancement with the circle of Willis and its proximal branches.  No focal areas of stenosis or aneurysm.  Impression, normal MRA of brain.  MRI Brain - scattered foci of T2 prolongation in the white matter, nonspecific.  Following contrast, no abnormal enhancement in the brain or its convering.  No acute intracranial abnormality, no convincing brainstem lesion.  Scattered foci of T2 prolongation in the white matter, nonspecific, but likely the sequelae of small vessel changes/hypertension, however demylenation/inflammatory diseases, prior infection, or vasculitis not excluded.  So the way I read that, given my history it is as likely as not the changes in the white matter is from demylenation.  Would you agree with that?  Also, do you see anything else of note in that report?  I kind of keyed on the "no convincing brainstem lesion", wondering if that meant a lesion may have been imaged?  I appreciate your thoughts and opinions.  Would like to be well armed when I go see the neuro tomorrow.  Sam