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
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!
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
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
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
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
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
I want Quix as my neurologist......
Kelly :-)
Thanks. You do a better job at explaining this than I do.
Bob
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
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
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
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
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
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
I did try to describe the difference between MRI and Clinical lesions in the HP that Ren referred to.
I will try again.
Clinical - The results of the History - what the patient tells the doctor or the results of the Physical Exam - touching and observing the body itself. The clinical part of a patient's information comes from the History and the Physical.
Para-Clinical - The results of laboratory and imaging tests and of tests that make measurements using machines (like EMGs and SSEPs)
Clinical Lesions - These are lesions that the thinking neurologist KNOWS exist in the Central Nervous System (brain, brainstem, spinal cord) because of malfunctions that are found on exam or recognized from the history. The list of possible clinical lesions is almost infinite. But, it comes down to knowing what a normal neuro exam looks like and recognizing abnormalities on the exam. Here are a few examples, some have been mentioned above.
Example #1
A person's deep tendon reflexes should be 1+, 2+, 3+ and with no extra beats. Also they should be symmetrical - the same on both sides. If the neuro exam show that most of the reflexes are about 2+, but they are 4+ (extra beats, called clonus) in the right leg, then they are not symmetrical in the legs. Also they have repeated jerks with just one tap which is always abnormal. This proves that there has been damage to part of the spinal cord that handles the reflexes in the right leg. There is no doubt about it. There is a clinical lesion found on clinical exam. The results of the exam PROVE that a lesion exists on the spinal cord.
Example #2
A similar finding is when the right side of a person has very quiet (but still normal) 1+ reactions on the right side, but all of the reactions on the left side are more reactive (2+. 3+, 4+) Again, they aren't symmetrical from side to side, so we know there is damage in the part of the spinal cord that deals with the reflexes on the left side.
Example #3
In an ideal world the neurologist would always believe the patient and the patient would always tell the truth. If the patient tells the doctor that in the past the right side of their face went completely numb and it stayed that way for 6 weeks. Then a year later, they had weakness of their legs - could bearly even climb a few stairs - that lasted for 2 weeks. Those two pieces of information tell the doctor that at those times they had lesions of the brainstem (face numbness) and the motor (muscle) part of the spinal cord the other time. Those would have been clinical lesions.
On the part of the exam that assesses sensation, if there are places that are completely numb in different areas, this indicates clinical lesions of the central sensory nerves. Yes, a patient could "could" fake the answers to the testing and Yes, many neurologists tend to not believe abnormalities they can't see with their own eyes, but if all was ideal this would indicate clinical lesions also.
MRI Lesions - These refer ONLY to the abnormal spots seen on the MRI emages themselves. No good neurologist would believe that the MRI is the only place that a lesion can be seen. Sometimes the MRI spots do actually correspond to clinical problems, but more often than not they don't. Any neuro that says if they can't see an MRI spot (lesion) that corresponds to a clinical problem (like weakness, numbness, color desaturation in the vision, ataxia) then there really isn't a problem is a dunderhead and dangerous.
Likewise, many spots (lesions) on the MRI don't apear to have corresponding problems in the body. It is what it is.
Summary - So, if a neuro is talking about lesions, he must keep in mind ALL the lesions - the ones found on a thorough neuro exam, the ones suspected from the history, the ones seen on tests like the VEP, PLUS the spots (lesions) seen on a good quality MRI.
MRIs do not show all there is to see. The good neuro will strive to put ALL the puzzle pieces together and realize that there is more than one way to recognize that the central nervous system has been damaged.
Does this help?
Quix (still kicking)