COBOB | Clincal Lesions versus MRI Lesions

[LisaJF]

I did not want to derail the other person's thread in regard to their personal matter so I started a new one where anyone can chime in or read to understand.


So, it would be my understanding that my MS Specialist was thinking in the path of MRI lesions versus clinical lesions  ie: Neuro-opth stating that I had no ON visible on exam and no explanation of why I have occasional bouts of double vision/blurred vision and my Urologist who stated my urinary retention/incontinence/hesitancy/frequency was anatomical and not neurological (did Vaginal Mesh surgery that did not work?)

What other symptoms are considered clinical lesions other than Trigeminal Neuralgia and Optic Neuritis?  

For example:
Ataxia?
Abnormal gait?
Hyperactive DTRs with clonus?
Positive Babinski?
Postive Rhomberg?
Paresthesias? (Left lower leg, bilateral feet, left arm, cervical spine and thoracic spine)
Spasticity?
Bilateral leg weakness?
Bronchospasm/Laryngospasm?
Abnormal position sense?
Involuntary muscle movements?  

Are these considered "clinical lesions"?

I just gave a list of my own symptoms (not all but some).

[Wobbly]

wow... all this information is way too much for me to understand, but maybe that's just today and tomorrow I'll get it?  

Lisa let us know how things go... and great post everyone

wobbly

[LisaJF]

I will type his consultation report verbatim, "I explained that it may not be possible to definitively diagnose MS and an empiric trial of therapy may be initiated.  The patient seemed satisfied but her significant other was unhappy that a definitive diagnosis could not be made at this time."


I have no idea what his intention was as to "empiric trial".  

I should probably ask him tomorrow huh?  If he says a month or two, I will run and get a new Neuro.

Lisa

PS - Thank you for responding!

[COBOB]

An empirical trial of Copaxone?  It really take about 9 months for Copaxone to begin causing a "suppressor" effect on the B-cells.  That is one heck of a trial.  Retail cost of that trial is well over $30,000.00 US.  You can not try Copaxone for a month or two and tell if it is working, and if your neuro thinks he can, "Run! Run away! Find a new Neuro!"  It take quite a while to modulate an immune system with Copaxone.

Bob

[LisaJF]

Hi Mary,

Thank you for your well thought out response and I'll try to answer back to a couple of your questions.

My MS Specialist withheld his diagnosis of "possible" MS until have I have consulted with a Neuro-ophthalmologist and a Urologist.  That if both of them say that my eyes and bladder issues are due to neurological deficits he would then start me on emperical trial of Copaxone.

I met with my MS Specialist again after I had seen my Neuro-opthalmologist for my blurred and double vision.  His report of conclusion was that he felt that what I had was transient (blurred vistion and diplopia) and no reason behind it.  He also stated that my vision was 20/20 (which I know it is not).  He also stated that my lesions were in the deep cortical matter which he made sure he dictated his summary in front of me and said, "And I informed Ms. LisaJF that she does "NOT" (he emphasized this word while looking straight at me) have MS.  Unfortunately for a transient issue, I still continue to have blurry vision (normally when Im tired or upon wakening) and once in awhile I have horizontal or vertical diplopia.  The diplopia (when it is happening) is relieved when I cover one eye.  It does go away though -- eventually).  

Next was my Gyno-urologist who stated my issues of incontinence, frequency, hesitation and "retention (was 320 ml) was structural and I needed surgery.  I had the "Vaginal Mesh" done.  Post op day #1 I was still leaking urine after voiding (when I stood up after emptying my bladder) and would have to sit down again. Or I would get up at night (at least 5 hours later) to go again then 4 hours later to go again upon wakening.  So in my eyes, this surgery did not work.  

When the MS Specialist read the Neuro-opth's report and I told him what the Urologist said and did he said, "Well I guess we can safely say that you don't have MS".  Then he said, "Your symptoms do not match up with your lesions."  "Youre a complex case".  "I would like to continue to follow you and perhaps see a "Movement Disorder" Specialist.

I did see her and she stated that I do not have "Huntingtons Chorea or Parkinsons" considering that my gait is spastic and ataxic, involuntary muscle movements, paresthesias, etc.  

I am to go see him tomorrow September 7,th at 1:45 pm.  I fell today down the stairs (lost my balance) Just got rug burn on the forearm and bumped on the ankle.  I think my one leg gave out on me or that I was carrying papers in my hand which covered my feet and I couldnt see where I stepped and miscalculated.  I don't even think it matters what I tell him from here on in.  All it sounds like its "complaining complaining complaining"

I tried to go to a reputable MS Specialist in my area and even went as far as making an appointment but...they don't accept my health insurance (medicaid) and therefore have to pay out of pocket, which I can't afford the 500.00 visit. (We both know that it would take her at least a few visits to determine right? Therefore it would be 1500.00 that I do not have).  I ended up cancelling the appointment.

You didn't misread my question.  Not that I'm aware of. I think Im trying to find something to hold onto to explain why I am having what I've been having for the past 15 months now. Since a lot of things have been ruled out.

It is funny that I went through an old paper drawer today and found scraps of paper and my old nursing calendar scheduler which mentions things back in 2007/2008 that I have had myoclonic jerks! (forgot about it until I read the detailed note I wrote), vertigo, "extreme fatigue", unsteady gait,  falling (legs gave out at work!!, I had a bronchospasm episode in 2007 as well, vibrating feet where I thought the nursing station's photocopy machine or telemetry machines were making it vibrate, etc. etc.  So in essence, this has been going on for quite sometime.

I think when symptoms stop you stop thinking about them until they reappear again.  

If I only knew what I should do now I would do so.  But for now, this MS Specialist is ALL I have right now until I can find a better solution.

Thank you again Mary for your wonderful response, support and information!

Lisa

[twopack]

Lisa, I guess I'm still not clear about your original question and what you are trying to figure out.  Are you thinking that your MS specialist refused to diagnosis you because he couldn't match up your symptoms ("clinical lesions") with the location of lesions on your MRI?  

Is that what he told you?  My memory is saying some doctor along the way told you your MRI was abnormal but didn't have a classic MS pattern of lesions.  (Is that right?  Sadly, my memory no longer enjoys a spotless reputation.)  All the docs SO MUCH like to see that classic Dawson's fingers pattern to give them confidence in claiming a diagnosis.  That is quite different though than claiming a need to play the match game between MRI findings and clinical evidence.

I don't remember hearing a lot of references to this term clinical lesions.  I can certainly be wrong about this but I'm not sure it exists as an official term in any diagnostic criteria.  I think of it more as a descriptive term to indicate an abnormality the physician would expect to find in a person with MS.  I think it could describe one indicator of abnormal neurological function or a group of abnormals that together indicate malfunction in a general area of the brain or spinal cord.  

I looked up the McDonald Criteria specifically.  It refers to diagnostic criteria of the MRI (described as T2 lesions in MS-typical regions) and to diagnostic criteria of clinical presentation (described as attacks with objective clinical evidence of one or two lesions).  You can review it yourself here:  http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

In my reading and personal experience it seems doctors initially look for MRI findings that indicate demyelination and a mix of patient reported symptoms and physical exam findings that can reflect demyelination.  In a perfect world the MRI pattern of damage looks "classic" and the physical evidence looks like a list of things commonly seen in PwMS.  

Lisa my dear, you were not born a citizen of Perfect World.  Even so, I don’t think your doctor (or most doctors for that matter) is focused on filling up boxes of the McDonald criteria with check marks so he can diagnose you.  If they were, they would print that criteria, slap it on the front of every chart and take the easy breezy documented way out of the difficult cases instead of weaseling out of them as we have seen many, many a time.  

Believe it or not, this ABSOLUTELY does NOT mean a doctor is blind to or discounting the physical suffering you present him!  (I’ve got more to say about this but think I’ll take those comments to our community under a new topic.)

If your MSologist didn't tell you directly that he can't/won't diagnosis MS in your case because "MRI lesions don't match clinical lesions" I'd hesitate before deciding that's his stance.  If he did make that statement I wouldn't waste another minute trying to satisfy him or his requirement!!

Lisa, I understand the desire to know what is going on in your body.  I understand the desire to make sense of why a MSologist withholds a diagnosis that seems so clear.  I understand the desire to be armed with enough ammunition to force same MSologist to reverse his decision.  It feels to me like these are the kinds of struggles that may have inspired your question.

I wish I could offer a substantial lead to help you find an answer…. answers.
I wish someone else could.  I’d read about it, celebrate and join you for a new leg of your journey.

If I have entirely misread your question I apologize for wasting everyone's time.  Perhaps you have the answer you needed from everyone above.  If not, please forgive and try to clarify.

Mary

[rendean]

To Lisa, you're welcome.

To Quix , thanks for cleaning up my sloppy presentation and producing a very easy to understand explanation. So happy to see you feeling better and back with us!!

Ren

[LisaJF]

Hi I want to thank you three for taking the time and effort to give me information regarding my question.  I appreciate this immensely!

(Kelly, I want Quix too!)

I suppose I can understand that I have a plethora of neurological symptoms that would make one stand back and say whoa.  However, these symptoms began 15 months ago just with fatigue, muscle tightness in left hip, left leg paresthesia, ataxia and thats it.  The fatigue always seems to be there although it can have good fatigue days and bad fatigue days (where I cant even stand to hold up my own weight).

As time passed, I had a month where I was without paresthesia and muscle tightness in my left leg but the fatigue was always there.  Then without warning another incident where neurological symptoms would appear, most of the ones I have had already came back and some new ones that would last 3 weeks to 2 months and then it would go away again.

It's been doing that and I have no idea if what I have are considered "clinical lesions". Sure there can be many explanations for all of my symptoms, but as blood work was done, LP, TEE, Vaginal mesh surgery that didnt work, etc sort of ruled out many things.  I'm sure there is still some diseases left...but for the life of me -- I wouldnt know  and sure as h "E" double hockey sticks my MS Specialist doesnt know either.

Thank you all again!!!

Lisa

[anon07072023]

I want Quix as my neurologist......  
Kelly  :-)

[COBOB]

Thanks.  You do a better job at explaining this than I do.

Bob

[Lulu54]

Dear Still Kicking,

We're sure glad you are still around and able to contribute in such a knowledgeable and understandable way.

It is great to have our expert here speak up and clarify these answers for everyone.

Hope you're kicking for a long time to come,
Lulu

[supermum_ms]

I hear what your saying bob but it seems a bit daft thinking, logically if you have clear and multiple CNS clinical sx then 'time' and 'space' should be easier to see, not harder. I find the criteria of 'time' some what irritating because it has absolutely nothing at all to do with the number of times you've seen a dr, lesions form with out a dr's permission and multiple clinical signs would be unusual to of 'all' happen from the one attack but they dont seem to get that 'time' is met because you have multiple clinical or MRI lesions.

My two cents........JJ  

[COBOB]

I can only speak to my case.  ON is directly relates to CN 2.  Only CN 1 and CN 2 are cerebral cranial nerves.  CN 3 - 12 originate in the midbrain.   So clinically, I have evidence of a lesion on CN2 and evidence of a lesion on CN 5.  Dissemination in time?  Yep.  Several months apart.  Dissemination in space?  Yep.  One midbrain and one cerebral.  Check.  

This plus 5 MRI lesions was enough for the MS Neurologist.  The decision to treat had more to do with the risks if we did not.  Issues with the right optic nerve and left optic tract puts 75% of my vision at risk.

Now, there are several things that can cause: Ataxia,  Abnormal gait,
Hyperactive DTRs with clonus, Positive Babinski, Positve Rhomberg,
Paresthesias, Spasticity, Bilateral leg weakness, Bronchospasm/Laryngospasm,
Abnormal position sense, Involuntary muscle movements. Interesting signs and symptoms, but
are they lesions?  Maybe not.  

Your doctor may not consider the to be specific to a location in the CNS to cause the sign or symptom.  They are "all over the place."  Cerebral, cerebellum, spinal cord, etc.  too many things at the same time for the doctor to call one thing a "lesion".  I had very limited well defined symptoms/signs one at a time with separation that made it easy for the doctor to see in a clinical picture.

When you walk into a Neurologist with a laundry list of symptoms, it is pretty hard for them to see them in terms of being a "clinical lesion" when they are all over the CNS and have no dissemination in time.  

At least that is my opinion.

Bob

[rendean]

If you connect a symptom to a specific area of the brain, my neuro believes there is a lesion  even if it's not visible. He said that current imaging only gets 1/10 to 5/10% of the lesions present. But as Quix pointed out in the Health Pages YOu don't necessarily have a visible lesion for every symptom. See her entry at the link below from the Health Pages:


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

I hope this helps clarifying things.

Ren

[rendean]

Continuation of the above information:



Cranial Nerves:
Review Info  


There are 12 pairs of cranial nerves.
  Olfactory I
  Optic II
  Oculomotor III
  Trochlear IV
  Trigeminal V
  Abducens VI
  Facial VII
  Auditory (vestibulocochlear) VIII
  Glossopharyngeal IX
  Vagus X
  Spinal Accessory XI
  Hypoglossal XII

To help memorize each, a mnemonic is often used by students such as . . .
"On Old Olympic Towering Tops A Finn And German Viewed Some Hops"

Cranial Nerve:        Major Functions:
I Olfactory                smell
II Optic                vision
III Oculomotor        eyelid and eyeball movement
IV Trochlear        innervates superior oblique
                               turns eye downward and laterally
V Trigeminal        chewing
                               face & mouth touch & pain
VI Abducens        turns eye laterally

VII Facial                  controls most facial expressions
                                  secretion of tears & saliva
                                    taste
VIII Vestibulocochlear
                                       (auditory)        hearing
                                      equillibrium sensation
  IX Glossopharyneal                taste
                                    senses carotid blood pressure
X Vagus                   senses aortic blood pressure
                                   slows heart rate
                                    stimulates digestive organs: taste
                                                                        
XI Spinal Accessory        controls trapezius & sternocleidomastoid (neck &back m                                                       back muscles)
                                         controls swallowing movements

XII Hypoglossal        controls tongue movements


http://www.gwc.maricopa.edu/class/bio201/cn/cranial.htm


I hope this helps!

Ren

[rendean]

Hi Lisa,
The literature I found is copied below. This may  help you  find the areas of dysfunction that yo u are looking for:

Brain Regions and Their Functions

Brain Regions Functions of Brain Regions

Cerebral Cortex The outermost layer of the cerebral hemisphere, made up of gray matter is involved in the functions of learning new information, forming thoughts, making decisions, analyzing sensory data and performing memory functions.

Corpus Callosum Connects right and left hemisphere and allows communication between the two hemispheres. Provides roof to the lateral and third ventricles.

Frontal Lobe Memory and cognition. Enables you to concentrate and attend, makes you capable of elaboration of thought, judgment, inhibition. Thus involved in personality development and emotional traits. Also helps in voluntary motor activity and motor speech

Parietal Lobe Processing of sensory input, sensory discrimination. Helps in body
orientation.

Occipital Lobe Concerned with primary visual reception area and primary visual association area which allow for visual interpretation.

Temporal Lobe Rules over auditory receptive area and association areas. It takes care of expressed behavior, receptive speech and information retrieval.

Limbic System Manages olfactory pathways, amygdala and their different pathways, hippocampi and their different pathways. Limbic lobes control the functions related to sex, rage, fear; emotions. The system is responsible for integration of recent memory, biological rhythms.

Basal Ganglia These are the subcortical gray matter nuclei which act as processing link between thalamus and motor cortex. Their functions include initiation and direction of voluntary movement, balance (inhibitory), postural reflexes, regulation of automatic movement.

Thalamus Sends the incoming sensory nerve impulses to the required appropriate regions of the brain for further processing. Most sensory signals, like auditory signals, visual signals and somatosensory signals pass through this relay station before being further interpreted in the brain. Its main function is providing the brain information on what is happening outside the body. Other functions include motor control, and control of muscular movements.
Hypothalamus Integration center of Autonomic Nervous System. It helps regulate body temperature and endocrine functions. It regulates various sensations, such as hunger, thirst, libido and is responsible for maintaining the daily sleep and awake cycle. It also controls emotions, autonomic functions and motor functions and maintains homeostasis by exerting control on the pituitary gland.

Internal Capsule Motor tracts. Dysfunction leads to paralysis of the opposite side of the body.
Reticular Activating System Responsible for arousal from sleep, wakefulness, attention. Dysfunction may lead to altered level of consciousness.

Cerebellum Coordinates and controls voluntary movement, maintains balance and equilibrium while walking, swimming, riding, etc., stores memory for reflex motor acts, coordinates simultaneous subconscious actions, like eating while talking or listening etc.

Midbrain Contains auditory and visual reflex centers. It is responsible for the reflex movements of the muscles of the head, neck and the eye and provides a passage for different neurons going in and coming out of the cerebrum.
Pons Respiratory Center. Has control over skin of face, tongue, teeth, muscle of mastication, muscle of eye which rotates eye outward, facial muscles of expression, internal auditory passage. It plays an important role in the level of arousal or consciousness and sleep and is involved in controlling autonomic body functions.

Medulla Oblangeta It contains the cardiac, respiratory and vasomotor centers and executes the most important function of the brain, that is, regulating our life processes such as breathing, maintaining a steady heart rate and blood pressure, inciting regurgitation (vomiting), swallowing, urination, defecation and in coordinating life saving reflexes.

There are some specially designed brain exercises which you may perform to enhance the power of your brain. I hope you find the above information on brain regions and their functions helpful. I hope this article has provided answers to the questions swirling in your brain.
By Leena Palande
Published: 6/7/2010
http://www.buzzle.com/articles/brain-regions-and-their-functions.html