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MRI results

I had posted a few days ago about my situation. Here is the post for reference: http://www.medhelp.org/posts/show/499900?post_id=post_2816925
I wanted to follow up with the actual results of my 2 MRI's and see if anyone can help me translate. I have my next Neuro appointment on Monday and wanted some feedback before going in to see him. Any help is appreciated. Thanks!

1st MRI: Sept 2007 "The ventricles and cortical sulci are moldly enlarged with prminent CSF fluid over the vertex. There is no mass, mass effect, or midline shift. There are multiple hyperintense foci within the white matter of both cerebral hemishperes on FLAIR and T2 weighted images. The largest lie in both peritrigonal regions and there is some focal signal in the corona radiata of both frontal lobes. This is concerning for demyelinating process.  There is no abnormal enhancement of these lesions on the postcontrast study. The brainstem, sella and suprasella structures appear unremarkable. Teare are normal flow voids. Orbits and paranasal sinuses appear relatively clear. "

"Impression: 1. Multifocal hyperintensities int he white matter of both cerebral hemisphered concerning for demyelinating process such as MS. Small Vessel Vasculitis is a less likely consideration. 2. Mild atrophy"

2nd MRI: March 2008  Multiple white matter lesions are again noted in both hemishperes. Some of these have a perpendicular orientation to the ventricles. No corpus callosal lesions can be definitely identified.  There are at least three more lesions in the ledt frontal region than on the prior study. One of the white matter lesions int he left frontal region is larger than on the prior study. There is no enhancement following contrast material. No mass lesions are present.  The brain stem, and posterior fossa appear normal. The sella and parasellar regions are within normal limits. No vascular malformation is present. There appears to be an artifact in the right side of the pons on the FLAIR sequence."

"Impression: Multiple white matter lesions are again noted. There has been an increase in number and size of lesions in the left frontal area. A demyelinating process such as MS is again a definite considereation. Other entities that might cause these lesions would be vasculitis, lyme disease, or a leukoencephalopathy."
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Avatar universal
Wow! Thanks for the detailed response Quix! I read your reponse multiple times and not only did it confirm what I have thought, but it was well thought out and helped me learn more about some of my test results. My neuro is the one who originally ordered the LP, VEP and blood tests after my PCP sent me to him after reading the first MRI report. At the time I didn't understand the severity of the 1st MRI, but in his office for the first time, when he said that he couldn't believe that my physical neuro exam didn't show more sypmtoms, was when I started to understand. After the LP, VEP and bloodwork came back negative, that is when he sent me to the MS Speicalist. She, at the first appointment after 5 miunutes said she didn;t think it was MS and wanted a second MRI. Then I got it, it showed new lesions and my regular Neuro wanted me to go back and see her. She saw me for a whole 5 minutes before telling me that it wasn't MS because I wasn't really showing symptoms. She waid I could come back and see her in 6 months if I wanted.

I will not being going back and instead called my regular neuro who agreed to move my appointment up 2 months, and it is tomorrow. I think I have a good idea what to ask tomorrow and what to press for.

I looked back in my lab results and they ran an ELSA Lyme test on bloodwork and then it says a Lyme WB was run on CSF. Both were negative.

I will ask for a new MRI series, including cervical and thoracic. He also did an EEG last week and I am interested in the results. I will also ask for another referal to an MS specialist, but I am not sure he has another specialist he usually refers to. The MS specialist I already saw was at the major university medical center 30 miles from my home. There is not another univeristy medical center withing 250 miles. Surely, one of the other hospital system in the major city 30 miles away has a specialist though.

When I fell last august, I was running and went to plant a foot and it didn't plant. The other foot didn't plant either. They were like spaghetti. Needless to say, my face and head broke the fall and that it why I went to the ER. They then did the CT, which led to the MRI. I don't really remember how long my legs were weak after that, only that I had a concussion, so I was a bit out of it. I had been having the dizziness for a month before I fell. So it all started before the concussion.

I am normally pretty active, like to go for long dog walks, and rarely slow down. While doing some home repairs today, I was swinging a hammer, standing on the step ladder, when 10 minutes in my arms and legs started shaking and I was feelin off balance. My other half made me sit down and kept saying how uncharacteristic that was for me. Made me think that maybe I am having more symptoms than I am aware off.

I really appreciate how responsive and helpful you all have been. I will keep you posted on how my appointment goes tomorrow.  I feel like I have you all there helping me through it all.  I have been reluctant up until now to put myself in the "limbo" category, but I think I can now say that I am in limbo land.

Thanks for helping me understand everything and the great advice!  I won;t be a stranger and hope that someday I can help other people like you all hav ehelped me.

-Amy
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147426 tn?1317265632
Well, you definitely present a twist on the situation we usually see!  I see the concern, but I also see what my take on it is.  You have all the MRI evidence in the world for MS (much less likely for anything else), but few symptoms.  That is the unusual part.  Then there is the thing we see over and over.  A neuro (specialist or not) who stated that it was a one-time thing, then saw that it might not be, and got her "back up."    She quoted the "rule" that it wasn't likely to be MS with a negative LP.  I'll get to this later, but there is NO rule or even a recommendation that a negative LP rules out the diagnosis of MS.  Period!

The first MRI screams MS.  The lesions are large, well-defined and in the typical areas for MS.  The radiologist thinks it's MS.  The first thing noted is that you have mild "atrophy."  Atrophy means the brain has shrunk.  It would only shrink if enough brain tissue has been damaged and then destroyed, for the whole brain to contract around and shrink in.  This is a bigger finding than the hyperintense lesions.  This means something has likely been going on for quite a long time.  

I would like you to read the Health Page called "Lesions vs. Symptoms:  This page discusses how MS can cause brain atrophy.  Of course, other things can, too, but rarely with the combination of things you have told us.

http://www.medhelp.org/health_pages/Multiple+Sclerosis/Lesions-vs-Symptoms/show/61?cid=36

Okay, if I remember, you are 33.  This is too young to have visible atrophy for any normal reason.  But, you have fairly few symptoms.  A tremor in the hand, some brief dizzy spells, abnormal fatigue, that episode where your legs collapsed under you, and heat intolerance.  These together certainly suggest MS, but don't diagnose it.  Can you also tells us how long your legs felt weak or abnormal after the fall while running?

The 2nd MRI (6 moths later) shows definite growth and progression of the lesions seen on the first MRI.  The first lesions are larger and there are at least three new ones.  Now some of the lesions are described as "perpendicular to the ventricles."  This is the classic orientation of MS plaques.  None of the lesions in either study show enhancement with the contrast, indicating they do not have new inflammation occurring.

So whatever was going on in the first MRI continued to get worse and that worsening was seen 6 months later.  We don't know if this is the same process/attack that was continuing.  We don't know that you had a second episode.

Another thing I am totally floored by is that this specialist is not breaking down walls to find out what it is you do have, given the progression on your MRIs.  Did she even have any plans for follow up?

The MS "specialist" did a VEP and an LP which were negative.  Based on this she states this is not MS.  On your urging, your regular neuro did a workup for the things that could look like MS.  One of these was Lyme.  You need to check with your reg neuro and see if that test was the ELISA test for Lyme.  If it was you need to ask that a "Western Blot" test be done.  This is a more accurate test.  BUT, from what I have read, if this were a galloping case of Lyme in the Central Nervous System you would be very, VERY, symptomatic - all over!  

What this specialist did not do - and I find completely astonishing - is do an MRI of your spine, cervical and thoracic.  Spinal lesions are much firmer evidence for the diagnosis of MS.  It sounds to me like she had declared her opinion and didn't want to be proven wrong.  You need to run from this woman as fast as your tired legs will carry you!

The first thing you need to request from your regular neurologist is an MRI of your cervical and thoracic spine done without and with contrast!  Many diseases that cause lesions in the brain do not cause lesions in the spine.  This is to be complete.  Since you have so few symptoms, the spine may well be normal, but I would want a careful look at the brainstem.  A lesion there could be the source of your episodes of dizziness.

The next thing you need is a new MS Specialist!!!!!   take a breath   !!!!!!!!!
One palce to look for a doc or a center with truly up-to-date info is with the Consortium of Multiple Sclerosis Clinics.  This is an international group of clinics devoted to sharing info and assuring that they are practicing the best possible care with the most current information.  Her is a link to see if there is one close to you.  It would be worth a drive to get to a truly excellent doctor.  Many here will attest to that.

http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528

Now finally, and I will soon write up an article on this topic.  There is no evidence, that I have seen or heard referenced, that all people who truly have MS will have positive Oligoclonal Bands "at Diagnosis!"  Because of one study that showed that 100% of the people with KNOWN MS in their study had them with testing under rigorous condtions had O-Bands, it appears that some neurologist have jumpted to the conclusion that they can require positive O-Bands for diagnosis.  This is beyond my comprehension.  The confirmation study, which was larger, found only 92% had O-Bands, or 1 in 11.  Again, this was NOT at diagnosis, but later in the disease.  

And there is no evidence at all for saying that a negative VEP rules out MS. Period.  That's just bizarre.

So tomorrow, you need to be firm about the neurologist, or some one, finding a truly excellent MS Speicalist to send you to.

You need MRIs of the spine as discribed above - and other people here have mentioned.

I would recommend a Western Blot test for Lyme (I still think this is unlikely)

And, given the marked progression of the lesions between the first and second MRIs of the brain, I think you should have that repeated also.  Many articles discuss doing an MRI at 1 to 3 month intervals if things are changing fast.

One last thing, I promise.  Your neuro wants to see "more symptoms."  Tons of people have been diagnosed after complaining of just a little vertigo or a small area of numbness.  You HAVE symptoms.  I hope he is not waiting for frank paralysis!

These are my opinions.  Yes, I expressed them strongly and you should know that I am not a neurologist, just a former pediatrician with a strong interest in the work up of things that look like MS.  Your situation is "atypical" and that will/may make the diagnosis a little harder.  But, you know you feel "off" and your MRIs substantiate that.

I wish you all the luck in the world.

Quix
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Avatar universal
Thanks to both of you for your responses. Quix: I would definitely be interested in your opinion, when you are feeling up to it. I think the hard part for me is that I didn't really know my symptoms and go to a doctor, but instead had an abnormal MRI and then was being asked if I have had any symptoms. I am pretty healthy, and typically don't go to the doctor that often. At first, I was afraid that my neuro was pigeon-holing me into an MS diagnosis, but I pressed a bit and he tested me for a whole lot more. He has done a lot of bloodwork, like a double-stranded ANA thingy, CBC, etc., but it all came back normal. They ran tests for Lyme in bloodwork and CSF, and both were negative. After all of those tests, he started having me keep a journal and asked some specific questions about any symptoms I have had. I didn't even realize the left hand tremor till he pointed it out.  Now that I have read about MS and other demylenating diseases, I feel like I shouldn't just keep a wait and see attitude. I have my appointment on Monday, and i want to ask him for a different refferral, to another neurologist, but not the MS specialist he already sent me to. I just want some feedback to maybe know what questions to ask. I feel like I always leave my appointments with unanswered questions, but I think it is my fault for not being very assertive. It is just frustrating and I don;t want to pass another opportunity by with the doctor on Monday. Thanks!
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429700 tn?1308007823
I was typing my response when Quix posted hers.  She'll be able to help you out.

Deb
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429700 tn?1308007823
I have no medical expertise.  I may try to take a stab at some of the findings because I want to help you, but I'm sure that someone more knowledgeable will be more helpful.

It looks like your MRI is consistent for MS, to me.  You have several white matter lesions, some of which are located by the ventricles, which is consistent with where lesions may be found in someone with MS.  Also, some of your lesions are enhanced.  

Atrophy is not a normal finding, either.  This typically isn't found in someone your age.  

The fact that your LP was negative may mean that you are early in the disease process.  

What kind of blood work have you had?  Have you been tested for indicators for vasculitis or lyme disease?  What about other autoimmune diseases?  If these are ruled out, your neuro will have to explain how you got all of these lesions.  This can't be explained away easily.  

Hopefully, someone will jump in here.  I'm in over my head when it comes to interpreting MRI's and other medical things.

Deb

Helpful - 0
147426 tn?1317265632
I got to your first post, which happened when I was AWOL.  I wrote out a glorious long response even though I am to pooped to pop right now.  And, because I was tired I changed pages to read another of your posts and lost everything I'd written.  Tomorrow is a new day and I will leave your post on my screen to remind me in the morning.
\
You are not forgotten.  You have options which I think you should take.

'til then, fair sunshine!

Quix
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Avatar universal
I also forgot to mentin that both scans were done on the same 1.5 tesla machine. The nuerologist requested this. Also, they were both head mri's with and without contrast.

Any help interpreting would be great!

Thanks!
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