looking for answers

[candy158]

Hello, I am new to this forum.  I am a 51 yr. old female that has been diagnosed with MS.  My questions is that my symptons keep getting worse, and my #7 neurologist seems to think that because my lesions did not light up this time with the enhancement, that there is no way the symptons are MS.  He told me that it could be Parkinsons as well because I have lots of those symptons.  I 'm wondering if this could be true.  I has 120 lesions on my brain, 20 large and over 100 small ones.  My symptons are as follows:  optic neuritis, poor balance, blurred vision, can't move my let arm much because of the pain., pins and needles, shooting pains, burning feet, numbness in my face.  Problems urinating, and am choking as well.  Can't sleep because of the pain, and the restless legs and muscle spasms.   What is your opinion??   thanks for listening

[Quixotic1]

I mislead you if you understood that "lesions don't enhance during a relapse."  When you relapse the lesions DO have increased inflammation around them, so they should enhance with the contrast.  The reality is that we don't always "see" the enhancement because it was too samll for the resolution of the MRI Machine.

I was diagnosed with only one T2 Hyperintense lesion in the right frontal white matter.  I only had that one for a few years.  Now I have "scattered small lesions."  My spine had to be imaged on a high-power MRI to see the lesions that the regular MRI missed.  I had six lesions there.

Going through this is definitely frustrating.  I hope you stay with us so that we can help answer the 100's of questions that come up.

Quix

[nanadebby04]

I have had "symptoms" for about 3-4 months, what made me go to the dr was the tightening aroung my breast area, which made it difficult to breath and move, I later learned this might be the "hug" I have heard about.  I have seen 2 neuro's, 1 an MS specialist recommended by a co-worker who has MS, my MRI of the brain showed a hyperintense signal within the frontal subcortical white matter which are nonspecific,, which I am learning in this disease is the way things go.  The spine MRi's showed nothing abnormal, but the MS neuro wants the C-spine repeated with MS protocol, she thinks something may have been missed.
It is all so confusing and sometimes frustrating.  
Ativan helps me sleep but then you feel "out of sorts" the next morning.
Thanks for the info above I will definitely look at those pages.

Thanks for this forum also, I have learned so much.

[Karen99]

Thanks, Quix.  I confused myself when writing that.  

Like so much of MS, the answers are not always clear-cut.  A simple yes or no doesn't cover all bases.  :-)

nanadebby- there is a Health Page section on this page, upper right hand corner icon.  You will find good information there that will help to understand this topic.  One of the most viewed pages is titled "How MRI's Show Lesions in MS" and "Lesions vs. Symptoms."  Take a look around those pages.  

How long have you had a diagnosis of MS?  

[Quixotic1]

I need to clarify something that Karen said, " A relapse does NOT equal an enhancing lesion or even new lesions. "

There are two ways of thinking about the word "lesion" in MS.   A relapse means that something new has happened in the central nervous system.  What that new thing is might be a new lesion or a new area of enlargement in an old lesion.  It might refer to the actual places of damage on the nerve fibers.  In this sense the sentence is not completely accurate.  New symptoms or worsening old symptoms do definitely indicate new areas of damage to to the fibers or an enlargement of an existing place of damage.  the brain lesion is the cause of the symptom - whether or not it is seen on the MRI.

The other way "lesion" is used is the actual spot seen on the MRI.  In this sense, Karen's sentence is completely true.  During a relapse you might not see a new lesion on the MRI (even though there is new damage in the tissue) and you might not see enhancement.

It all goes back to the lack of correlation between lesions (seen on the MRI) and symptoms.   It's almost like we should specify actual brain lesion versus MRI spots.

Clear as mud?

Quix

[Karen99]

Hi.  I too am curious about any treatment or referrals your neurologist has offered you.  Not being able to sleep is the worst!  I hope you can find something that will help you get some sleep and relief of your symptoms.    

It is often by chance that a lesion is caught enhancing.  An enhancing lesion is considered an active lesion at that moment, but the MRI's do not tell the whole story because much of MS cannot always be seen and does not always correlate with symptoms. To make matters more confusing, you can have active demyelination without a clear relapse,  with no new lesion, or no enhancing lesion.  What Quix said about this was:

"The majority of people who are imaged with an MRI during a relapse will not show lesion enhancement.  That is one reason that a "relapse" is not defined by how the MRI looks, but by what the patient reports."

What the patient reports is the biggest factor to be considered in a relapse.  A relapse does NOT equal an enhancing lesion or even new lesions.  

I know this is confusing, but I wanted to make sure that you understand what Quix wrote.  

Take care.    

[nanadebby04]

You mention above that during a relapse that lesions don't enhance, so then should you have MRI's when you aren't having many symptoms or a relapse?

[Quixotic1]

Hi, and Welcome to the forum.  I hope we can help you with this.  

First, when did you get your diagnosis?  Do you generally have a pattern of relapses?

I have to smile at your having Neuro #7.  This isn't even a record on this forum.  There are some real dunces and stinkers out there.

I am a physician with MS, though I was not a neurologist, I read everything I have energy to read in the medical literature about it.  Your neuro is WRONG in his assessment of whether your new symptoms are MS or not.  The determination of an MS Relapse is made on the basis of the "symptoms" NOT the MRI!  If you have new or worsening symptoms of the kind that are seen in MS, and there has been at least a 30 day period in which your previous symptoms were improved or stable - Then you are having a relapse - no matter what the MRI says.

All lesions that a person with MS has are NOT visible on the MRI.  Yet, we know that these invisible lesions can cause major symptoms if they are in the right spots.  For instance it is not unusual for a person with MS to have pathologically increased tendon reflexes (when they tap your knee, ankle and wrist).  This means there is a lesion in the spinal cord - whether or not one shows up.  Period.  This is medical fact.

So if the new lesions are very small or if the amount of inflammation along the side of the lesion is very tiny, they may not show up on the MRI.  Any neurologist that believes that an MRI shows 100% of all that is happening in the brain is out to lunch.  We call those neurologists "lesion counters".  They can do us harm because they may not recognize that a symptom IS, indeed, part of a new relapse and then deny us proper treatment (like steroids) or worse, they may take away the diagnosis erroneously and leave us twisting in the wind.

These doctors use the MRI instead of their brains - almost like worshipping a god.  

The majority of people who are imaged with an MRI during a relapse will not show lesion enhancement.  That is one reason that a "relapse" is not defined by how the MRI looks, but by what the patient reports.

Of course, you did not tell us everything about your history, so I can't comment on whether MS is the correct diagnosis for you.  The type of things your are suffering from are certainly the kinds of symptoms seen in MS.  AS for whether they are also the things seen in Parkinson's Disease - well, I'm dubious - very dubious.

BTW - that is a huge number of lesions!

This kind of thing is very frustrating when someone is in the hands of a doctor who has such mistaken beliefs about how it is you view and handle symptoms in MS.  Is this doctor at least treating your RLS, nerve pain, paresthesias, and has he referred you appropriately for evaluation of your swallow and your urinary problems?  Is he taking care of you appropriately otherwise or is he now waffling on the diagnosis.  If it is the latter, then it is likely time to find #8.

People with MS do get movement disorders like RLS, myoclonic jerks, tremors, and other dyskinesias.

I hope this helps.  WE had a thread not long ago called, "Lies my Neuro Told Me".  I think one of them was trying to define a relapse by the MRI and not by the patient report.  You can read it here:

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

I hope you hang around with us, because we have a great bunch of people here, a lot of support and answers, compassion and great info.

Quix