I Know what I don't know

[johnniebear1918]

I’ve read this board for a few months,  I feel blessed to have found it.   I had a MRI done because of bad headache.  So here’s my story, I welcome your input Please…
Guess I’m in limbo like many others just waiting for the hammer to hit me one day.


50 year old white male.
Good blood pressure
No major symptoms  that I have noticed, other than , right hand dropping items sometimes, and slight balance

Here’s my questions
1) I was told if the second lesion grows it must be removed, that doesn’t sound like me M.S.   Right?
2) Do they always report the size of the lesion?
3) I just have very small balance problems, and right hand I’ll some times drop things.
4) Do you have to have symptoms to have M.S. ?
5) How many lesions can you have without any problems or does size & location matter?


First Dr that ordered the test said, its just part of getting older, don’t worry about it, well I fired that a Dr. this new Dr has ordered more MRI’S  & all the other tests.


I have two lesions
One Band noted from the LP test

Brain stem response,
Abnormal conduction following right ear stimulation with only wave V being discernible (two trials)
Left ear stimulation waves 1 thru V are blunted

Visual Evoked Responses, abnormal prolongation of P100 following the left eye
All blood work is normal & B-12

Visual Field tests are normal

MRI 3 total  w/wo contrast   to date,  fourth is scheduled for May 2010

MRI  (1) May 2009
There is a T2 hyperintense lesion in the left pericallosal white matter of the left frontal lobe with subtle enhancement on the postcontrast sequences

MRI  (2)  
August 2009  
Since the last MRI there has been interval development of and approximately 7mm x 5 mm focus of increased T2/flair weighted signal within the subcortical white matter to cortical region of the posteromedia left parietal lobe, reminder of the  study shows left & right have  a small periventrical increase, with the left side focus again having some minimal enhancement with an additional tiny focus of increased signal intensity redemonstrated in the right  frontal white matter




MRI (3) Nov 2009
No new foci of abnormal signal intensity is seen in the pervientricular and subcortical white matter bilaterally , small areas of abnormal signal intensity are again seen.

So now I wait to see the Nero again in May, maybe to get a DX after the next scheduled MRI

[johnniebear1918]

My wife & I thank you  for your great response.

Very helpful....   :-D

[Quixotic1]

Hi, and Welcome to our family.  I've meant to add my thoughts to your post for a few days, but have been noodlebrained and otherwise distracted.

I was so blown away by the bizarre notion that one would contemplate surgically removing lesions as described in your MRI, that I went back and studied the three MRIs very closely.

In May you had a lesion in the left frontal lobe that enhanced.  

In August you had a moderate-sized lesion in the left side (parietal) lobe.  This extended from the part of the white matter just below the junction with the gray matter to the gray matter itself.  The report is not clear whether this extended "into" the actual gray matter.  It also showed an increase in signal right around the ventricles.  One such lesion (focus) on the left showed enhancement.  It sounds like this one was also seen on the May MRI and was enhanced both times.  (I can't be sure of this, tho).  There was also a lesion in the R frontal lobe.  This is tiny (often when considering MS they don't "count" lesions less than 3mm), but the wording suggests that they saw this one in May also.

November - Nothing new, nothing changed.  No enhancement seen.

Now, I am not an expert on interpeting MRI reports and NO DIAGNOSIS should ever be made from a report!  Only from analysis of the actual images.

But, there was concern about the second lesion, possibly because of it's location across the subcortical-cortical junction.  In my reading lesions of this location are disagreed on by MS MRI experts.  Some think it suggests more of a malignancy.  Others disagree.  Maybe this was why someone said something about removing it.

Of some confusion is whether there was still enhancement of a left periventricular lesion.  That is a long time to stay enhancing.  Typical duration of the enhancement (lighting up with contrast) is 4 to 6 weeks, occasionally 2 months, rarely as long as 6 months.  That might have set them back.

Bravo to you for firing any doctor that says that an enhancing lesion is part of the aging process.

Okay, a few more comment:

One O-Band on the LP.  This doesn't qualify for a positive result because a number of people with other neuro problems and some without known problems will have an O-Band here or there.  In reality, even one O-Band is abnormal and points toward MS, but is not great evidence.

Your ABR (BAER) is abnormal.  Again, subtle findings that point toward MS, I think.  I don't know much about interpreting the BAER.  It is abnormal when there is demyelination in the brainstem.

VEP - Delayed P100 - The cutoff is sometimes called at 115msec.  A significant delay is evidence of prior optic neuritis.  It doesn't matter if you have never had symptoms of optic neuritis.  It can occur subclinically (without symptoms) and with minor symptoms.

Where the heck is the MRI of your spine??  If MS is in the differential diagnosis and the MRI of the brain is not diagnostic, then the recommendation is that the spinal cord be imaged.  This should be done on the highest resolution MRI machine available.  The brain is pretty easy to image on most 1.5T or 3T, but the spinal cord is very difficult.

My answers to your questions will agree with Lulu's, but I'll give them anyway.

#1  - No, you would NEVER plan to remove an MS lesion.  Perhaps the location of the lesion made someone think that a tumor was a possibility.  I would get a second and a third opinion before undergoing surgery.  But, It sounds like it is not still growing.

#2 -  The radiologists are supposed to note the size, number, and locations of all lesions.  They do not always do this.

#3 -  MS frequently disturbs the balance.  It may be very subtle.  Also, pain from your Achilles tendonitis can throw off your balance, from your body's attempt to protect itself from pain.  I have an Achilles tendonitis from my abnormal gait due to spasticity.  By limping I have strained the tendon.

#4 -  Yes, you have to have symptoms to have MS.  Symptoms are the very basis of the MS diagnosis.  But, we know that MRI lesions can predate symptoms by quite a long time - possiby years.

#5 -  You can have tons of lesions.  If they are in a quiet part of the brain then you may have no symptoms.  90% of the brain is neurologically quiet - meaning we have no idea what it does.  You can have silent spinal cord lesions, but they are less common.  Most of the spinal cord is made up of nerves that have known purpose.

You might want to read one of our Health Pages that discusses this:

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

Welcome again, I hope this helps.

Quix

[Lulu54]

Hi JB,,

This nurse doesn't know what she's talking about if she is saying an MS lesion can be surgically removed.  I am 100% positive that surgery is NEVER done on MS lesions.....  

they cannot be removed - they are not a growth or a tumor.  They are an erosion of the myelin.  The lesions are already a NEGATIVE growth ...

I hope this makes sense.

Surgeons are in the cutting business .... you need to be seeing an MS specialist - a neurologist who knows the latest about MS.  

What type of DX did he say he hopes to give you in May?

I'm not surprised you have concerns and worries with this - that is normal.  And when you are getting this type of information that would only make more sense to be even more concerned.

Please post all the questions you think of and someone here will help to guide you through.

my best,
Lulu

[johnniebear1918]

I talked  to the Dr's  nurse today & asked if she could tell me in more simple terms why the big concern on the new lesion.

I was told by her, the new lesion on the left motor strip is of most concern,  it may be stable if not & it grows it must be removed. At this point they haven't ruled out M.S.

She explained this why I drop items with my right hand, it doesn't happen very much.

This was the second Dr I seen after I fired the first Dr  for saying its part of the aging process.  
This Dr is  a Neurosurgeron and recommend the neuro that now see's  me,  and  said he said he hopes to give me  a Dx after my next appointment in May.

So now I wait  with the new concerns, and  try not to worry & enjoy each day.

[johnniebear1918]

Thanks,  so many people I read about on the board have it so much worse that I do,

I'm just at the start of this,
I do have chronic Achilles Tendonitis in both ankles,  don't know if that's related in any way to M.S.
P.T.   hasn't helped me for that,  so I had PRP injections  to try to help.

Here's the link for that
http://www.nyfootandankle.com/prp/?gclid=COjttPqmvZ8CFQUMDQod3Skt3Q

Let  me say that any day my feet can hit the ground and can take of myself is great day, My wife and I haven't told anyone about my medical concerns. I have two kids serving our Nation and they just don't have a need to know.

Thanks Lulu54.

[Lulu54]

Hi JB and welcome to our little safe corner of the web.  You have been through a lot of MRI's in a short period of time - this neuro must really believe there is something there and is just waiting to catch it on film.

I am glad to hear you fired the first neuro - age is not a factor here and several of us were older when we got our DX.

Now for your questions -

1) lesions are not removed surgically.  They are not a growth like a tumor or other mass.  Lesions in this context are areas of myelin that have been eroded.

2) If they follow the strict letter of the mcDonald criteria, the size and location will be noted on the report.  That said, I have yet to be told the size of any of my lesions.

3) I had balance problems that I lived with for years.  It wasn't until they did an EMG for my numb foot (peripheral neuropathy) that they ordered an MRI and accidentally found the MS too.

4) You probably have some types of symptoms but aren't aware of them.  I know some of the wonky things in my body I now know is the MS, but hadn't ever given it a thought.

5) Size doesn't necessarily matter but location is everything when it comes to lesions.  I wrote about this a while back - here's the link. http://www.medhelp.org/user_journals/show/45847?personal_page_id=865800

hopefully something here is helpful to you -  

wishing you well,
Lulu