Lesions and Symptoms -One and the Same?

[Quixotic1]

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.

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.

Quix

[doni54]

bump.....

[Nanners123]

Thanks you two, Quix I do remember your mentioning the Hereditary Predisposition to Pressure Neuropathy. I looked this up on the internet and actually asked the neuro about this and also put it into the Hx and questions I had for the doc. He did not address the question in his office and has yet to look at my timeline. To my knowledge no one in the family has any type of neuropathy.

Quix your explanation makes all the sense in the world. I do believe he was able to localize it. In the middle of the test he asked me if anyone in my family had sugar problems. I told him they did not.

The more I give this thought, I do not believe he is such a bad doctor in fact years ago he was a lifesaver when I suffered from severe Cluster Migraines. He prescribed my with Naprosyn and Fioricet which I took faithfully for six months and no more trouble with that. It has been about 20 years.

I still am not happy with how busy he is every time I see him. While I can understand that emergencies happen and docs can quickly become overwhelmed, I do not appreciate his rushing off as if to avoid my questions. I like your suggestion Sally that I do not have to dismiss him while I get another opinion. I truly hope I am with a good doc. I will go to this next neuro and see what happens.

N

[Super_sally888]

Hi Nanners,
I can't really say if this neuro is good or not, but the problem is that MS (or any neurological condition) is a long term problem and you need a good relationship with your doctor and to feel that he is offering adequate care, him being busy aside.  Something that you obviously don't feel now.  

Only you can know if you should give this dr another chance (not being able to come up with a diagnosis is not reason to dump him, but not providing adequate follow-up / explanation is a problem.....

Patient - doctor relationship is a two way street.  Yes we have to understand they are busy and behave accordingly, but they need to provide us adequate medical care....  Also doctors are individuals with all their idiosyncracies and we have to work out how to work with them.... to nuture the relationship.... while getting what we need.

I was not so happy with my Doc Mike and even got a second opinion (you can get a second opinion without leaving the first one....), but the second opinion made me realise how good my doctor actually is (though he doesn't have any answers) (the second opinion blew me off as too hard), and now all the recent developments make me even more sure I am with a good dr.....   But for Doc Mike, I need to do my research and come prepare to discuss (as concisely as possible) and be open...

Sorry rambling here.  Hope this helps.

Sally

[Quixotic1]

In the peripheral nerve entrapment syndromes like Carpal Tunnel Syndrome and Ulnar Entrapment Symdrome, the damage is caused by pressure on the nerve out in the body - on the peripheral nerve itself.  I have to presume that when he did the Nerve Conduction Studies he found that the nerves are just fine higher up, but that he can localize the damage to a specific spot.  He would have you wear the braces to see if those position the wrist/hand better and relieve this pressure.  It is always good to get the nerve into the best shape possible before surgery, and for him to know that no more conservative measure helps.  This is being prudent and cautious.  If the braces help I can't see that it would tell him anything about the Central nervous system and your other symptoms.  It would say nothing about the presence or absence of MS.

Did I mention to you the existence of Hereditary Predisposition to Pressure Neuropathy?  Do other members of your family have this kind of problem?

No, if he is acting like he has tunnel vision with regard to the compression syndromes, then you have to decide whether you trust him on those issues and are going to let him try to solve them.  If so , you do that and turn to someone else for the balance, fatigue and severe neck pain.  I don't remember, did you ever get your whole spine MRI?  I remember the lumbar, but not the cervical and thoracic spine.  It wouldn't be a bad idea to insist on those before surgery so you have a better overall picture of the entire nervous system - central and peripheral.

If you have any doubts about this doc's diagnosis of bilateral CTS, then yes, you need new blood!

Quix

[Nanners123]

I am reading this and am wondering if the neuro I am disatisfied with may have a method to his madness. When you describe

" In the context of MS, when the myelin of the nerve is damaged, it slows the signal being sent down that nerve."

I wonder if it is possible that because this doc sees slowed signals in my nerves he is wanting me to wear the braces to see if it eleviates the Sx, if not he may progress to further testing such as the MRI of the neck and upper spine. What is so frustrating is that he is always so busy and when I ask him about the possible causes of the CTS and ulnar nerve damage he blows me off. He also does not seem to take my questions about my balance issues seriously, and has no time to listen to other Sx.

Do you think I am being hasty in making an appointment with a new neuro?

N

[Quixotic1]

ARE RELAPSES CAUSED BY NEW LESIONS OR BY OLD LESIONS?

I'll probably garble this, but I'll try.  It's something everyone needs to understand.  In the context of MS, when the myelin of the nerve is damaged, it slows the signal being sent down that nerve.  So new lesions, which just have early damage are capable of causing symptoms.  As the area of damage gets worse, the signal will slow even more.  When it is scarred the signal stops - that also can cause symptoms and if the areas completely drops out the loss of signal would cause the same symptoms.

If the body is able to repair the damaged myelin, we know that the nerve still isn't as good as it was.  The signal will still be slower.  A good example is with Optic Neuritis.  Even if the optic nerve is repaired after a bout of ON and it looks good on exam, the EVP will still show a slowed signal conduction velocity - as a sign of "prior" attack.

It is felt that relapses occur as a result of a new batch of lesions occur.  These can be in new places or in the same place as old attacks.  When they use MRI's to monitor for new disease, they look for new, enhancing lesions.  So the answer to your question is both.  New lesions and reactivated old lesion both can cause relapses (sometimes it's a combination of both).

Quix