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What Kinds of Symptoms Don't Sound Like MS?
I seem to have thoroughly confused everyone when I talk about patterns of symptoms that are not typical of MS. I probably sound like those dreaded, dufus neuro's we roast on Friday nights. A couple things come up all the time. these two are when I talk about "symmetrical" symptoms and when I talk about "all over" symptoms.
DEFINITIONS:
Bilateral - on both sides (anywhere on either side)
Symmetrical - appearing the same on both sides
Mirror-Image - Perfectly symmetrical on both sides
Global - all over the body
Systemic - acting throughout the body and not localized to the central nervous system
ORGANIZATION OF THE BRAIN AND SPINAL CORD
I don't know how many of you know in general how the nerves are organized in the brain and spinal cord. This is something that is fairly important to have a vague idea about. In the brain, the functions of sensation and movement are very symmetrical. This means that the nerve that moves the right great toe is in exactly the same place on one side of the brain as the nerve that moves the left great toe. However, these two spots may be quite a distance from one another. They will also be quite a distance from the spots on each side that move the thumbs.
In the spinal cord the nerves move in "tracts" that extend all the way from the bottom to the top of the cord. The sensory nerves are in two symmetrical tracts and the motor nerves are in two others. These tracts are close to each other on each side, but separated by a little distance from the other side's sensory and motor tracts.
THE RANDOM NATURE OF MS ATTACKS
I would like to start with some ideas about how MS does its attacking. Remember that the common, early symptoms of MS are the inflammatory lesions of demyelination. The disease attacks randomly, here and there as seen by the appearance of the visible lesions on MRI. It can hit both sides of the Central Nervous System, but it does so one distinct lesion at a time. Many distinct lesions can appear at one time. When I say that the disease doesn't usually present with symmetrical symptoms, I mean that the attacks on the nerves don't usually hit EXACTLY the same spot on each side of the brain or spinal cord.
Think of MS as attacking like guerrilla warfare. It may have a mulit-front attack, but each band of fighters chooses its own target. The fighters have preferences for certain areas, but while one might choose the edge of a village, another might choose the center, and another a place where people gather. The bands aren't necessarily too bright and many choose targets that won't accomplish anything - vacant fields, big rocks and forest meadows. These less than brilliant bands don't cause any symptoms.
Over time MS tends to cause lesions in the same "general areas." Now this gets tricky to describe. When we say general areas we mean certain areas of the brain like the periventricular region, the corpus callosum, the cerebellum, part of the brainstem, and certain tracts within the spinal cord. Over time, the lesions may take on something of a symmetrical appearance, but it will NEVER be a mirror-image, that is, one side perfectly reflecting the other.
WHAT MS DOES ACT LIKE
With the exception of Tranverse Myelitis, MS attacks and we have a batch of symptoms as our first attact. Attacks are often "bilateral," meaning we have some symptoms on both sides. But it would be very unusual to have the same EXACT symptoms on one side of the body as on the other. Another way of saying this is that lesions don't appear symmetrically - they don't appear in the same spot on each side at the same time. For example, we may have a numb hand on both sides, but on the right it may be mostly in the fingers, and on the left side it may be a glove-like numbness reaching up to the wrist. Over time both hands may become "numb," but still the person may notice differences like the right hand feels more tingly.
The same with weakness or spasticity. Almost everyone notices that there are differences between the extent of weakness between the two sides. Clearly the lesions are a little different side to side in the Central Nervous System. So you get descriptions of symptoms like, "my right arm and hand became weak, I had right foot drop, and a cold patch on the left thigh. The left side of my face hurts when I chew and the right cheek is tingly.
It is important to understand that over time we get more and more lesions. This increase in lesions - on both sides - may lead to some symptoms becoming pretty symmetrical. The difference is that they didn't "show up" in a symmetrical pattern. Another example is trying to do a huge painting by standing in one place and throwing the paint out of a paper cup. Try as you might the splatters (lesions) will not be symmetrical. The more paint you throw (attacks you have), the more the two sides might come to look like each other, but that is through the process of accumulating lots of paint (lesions).
The big difference in this is the condition of Transverse Myelitis. Literally the words mean "across the spinal cord." If a lesion does cross all or most of the way across the cord, then you can get symmetrical symptoms. In fact, MOST of the symptoms in TM are symmetrical and THAT is the tipoff. Also, a neurologist, who knows exactly how the nervous system is oriented, can tell where the lesion is by the level of weakness and sensation loss on exam. In cases of partial TM this gets much harder to call.
SO WHAT DOESN'T MS ACT LIKE?
When people have the sudden onset of numbness and tingling in "their hands and arms and legs and feet and both sides of their face," and they don't feel a difference between the two, that is a clue that this is unlikely to be MS. A spinal lesion would have to be very large (and obvious on the MRI) for this to be MS. They would have to have a different set of lesions on their brainstem for the facial numbness - again in the "exact" same spots on each side. We hear people with this type of complaint frequently.
What this type of pattern suggests is something "systemic." The nerves throughout the body are affected and irritated. Things that could cause this kind of all over symptoms would be infections (like Lyme Disease) or metabolic problems (like B12 deficiency or thryoid disease) Systemic problems circulate through the body and can affect everything at once. This is in contrast to MS where the damage is here and there in isolated lesions.
Well, my brain is pooped and I'm not sure I am making sense. My inner voice is expecting a call from Nintendo, so I will sign off and await the likely deluge of questions.
Quix
DEFINITIONS:
Bilateral - on both sides (anywhere on either side)
Symmetrical - appearing the same on both sides
Mirror-Image - Perfectly symmetrical on both sides
Global - all over the body
Systemic - acting throughout the body and not localized to the central nervous system
ORGANIZATION OF THE BRAIN AND SPINAL CORD
I don't know how many of you know in general how the nerves are organized in the brain and spinal cord. This is something that is fairly important to have a vague idea about. In the brain, the functions of sensation and movement are very symmetrical. This means that the nerve that moves the right great toe is in exactly the same place on one side of the brain as the nerve that moves the left great toe. However, these two spots may be quite a distance from one another. They will also be quite a distance from the spots on each side that move the thumbs.
In the spinal cord the nerves move in "tracts" that extend all the way from the bottom to the top of the cord. The sensory nerves are in two symmetrical tracts and the motor nerves are in two others. These tracts are close to each other on each side, but separated by a little distance from the other side's sensory and motor tracts.
THE RANDOM NATURE OF MS ATTACKS
I would like to start with some ideas about how MS does its attacking. Remember that the common, early symptoms of MS are the inflammatory lesions of demyelination. The disease attacks randomly, here and there as seen by the appearance of the visible lesions on MRI. It can hit both sides of the Central Nervous System, but it does so one distinct lesion at a time. Many distinct lesions can appear at one time. When I say that the disease doesn't usually present with symmetrical symptoms, I mean that the attacks on the nerves don't usually hit EXACTLY the same spot on each side of the brain or spinal cord.
Think of MS as attacking like guerrilla warfare. It may have a mulit-front attack, but each band of fighters chooses its own target. The fighters have preferences for certain areas, but while one might choose the edge of a village, another might choose the center, and another a place where people gather. The bands aren't necessarily too bright and many choose targets that won't accomplish anything - vacant fields, big rocks and forest meadows. These less than brilliant bands don't cause any symptoms.
Over time MS tends to cause lesions in the same "general areas." Now this gets tricky to describe. When we say general areas we mean certain areas of the brain like the periventricular region, the corpus callosum, the cerebellum, part of the brainstem, and certain tracts within the spinal cord. Over time, the lesions may take on something of a symmetrical appearance, but it will NEVER be a mirror-image, that is, one side perfectly reflecting the other.
WHAT MS DOES ACT LIKE
With the exception of Tranverse Myelitis, MS attacks and we have a batch of symptoms as our first attact. Attacks are often "bilateral," meaning we have some symptoms on both sides. But it would be very unusual to have the same EXACT symptoms on one side of the body as on the other. Another way of saying this is that lesions don't appear symmetrically - they don't appear in the same spot on each side at the same time. For example, we may have a numb hand on both sides, but on the right it may be mostly in the fingers, and on the left side it may be a glove-like numbness reaching up to the wrist. Over time both hands may become "numb," but still the person may notice differences like the right hand feels more tingly.
The same with weakness or spasticity. Almost everyone notices that there are differences between the extent of weakness between the two sides. Clearly the lesions are a little different side to side in the Central Nervous System. So you get descriptions of symptoms like, "my right arm and hand became weak, I had right foot drop, and a cold patch on the left thigh. The left side of my face hurts when I chew and the right cheek is tingly.
It is important to understand that over time we get more and more lesions. This increase in lesions - on both sides - may lead to some symptoms becoming pretty symmetrical. The difference is that they didn't "show up" in a symmetrical pattern. Another example is trying to do a huge painting by standing in one place and throwing the paint out of a paper cup. Try as you might the splatters (lesions) will not be symmetrical. The more paint you throw (attacks you have), the more the two sides might come to look like each other, but that is through the process of accumulating lots of paint (lesions).
The big difference in this is the condition of Transverse Myelitis. Literally the words mean "across the spinal cord." If a lesion does cross all or most of the way across the cord, then you can get symmetrical symptoms. In fact, MOST of the symptoms in TM are symmetrical and THAT is the tipoff. Also, a neurologist, who knows exactly how the nervous system is oriented, can tell where the lesion is by the level of weakness and sensation loss on exam. In cases of partial TM this gets much harder to call.
SO WHAT DOESN'T MS ACT LIKE?
When people have the sudden onset of numbness and tingling in "their hands and arms and legs and feet and both sides of their face," and they don't feel a difference between the two, that is a clue that this is unlikely to be MS. A spinal lesion would have to be very large (and obvious on the MRI) for this to be MS. They would have to have a different set of lesions on their brainstem for the facial numbness - again in the "exact" same spots on each side. We hear people with this type of complaint frequently.
What this type of pattern suggests is something "systemic." The nerves throughout the body are affected and irritated. Things that could cause this kind of all over symptoms would be infections (like Lyme Disease) or metabolic problems (like B12 deficiency or thryoid disease) Systemic problems circulate through the body and can affect everything at once. This is in contrast to MS where the damage is here and there in isolated lesions.
Well, my brain is pooped and I'm not sure I am making sense. My inner voice is expecting a call from Nintendo, so I will sign off and await the likely deluge of questions.
Quix
Thanks Quix for all the time you devote to the forum - I know it is of tremendous benefit to everyone when you share your knowledge and experience. I was reading all the posts and must admit to feeling some all too common frustrations. Our doctors don't spend much time imparting information to their patients. I realize that it's at times for legitimate reasons, - lack of time, patient not inquisitive, or able to take in the information; BUT too often the information isn't shared cause they don't know it or worse - .
Cynical? Yes. Too many years of experience with doctors and illness and multiple dx. After a while, you can't help but feel the frustration of a pharmaceutical and insurance driven system with so many specialties focusing on the "small" picture that the "big" picture (the patient) gets ignored.
I don't want to restate the basics of the MS physiology / symptomology, but I'd like to add a few variables we can sometimes forget.
1. If you have the dx of MS - it doesn't mean you might not also have another as well. If not another disease state - perhaps a disorder, or symptoms that occur secondary to the MS itself. For eg., when you break a leg, your gait, balance, and other compensatory movements all lead to secondary aches, pains, and strains.
2. Those who've asked about fatigue. Don't forget that MS causes many things to be harder for us to accomplish than others. Depending on what is effected in your case, due to the location and the destruction severity of nerve conduction you have, involved activities will cause not only fatigue, but also the secondary injuries I mentioned above.
3. Cognitive difficulties aren't fully understood, but any slowing of nerve conduction can create in some, a slowing of cognition as well. Information from sensation is retrieved and stored more slowly.
4. There are deficits of different types. There are negative effects; where an ability, or function is taken away - such as lost eye sight, numbness, or paralysis. There are also "positive" effects; where a sensation is added, such as parasthesias, hyper-reflexes, etc. Has the myelin destruction caused a speeding up of impulses, or a slowing, or a total disruption? Has the damage gone past the myelin and destroyed the axon? Also, even if the myelin regenerates, which in RR, it often does - it is not the same as before. It is more fragile and subject to damage more quickly. It can "short" out as well. These can cause "non-typical" symptoms.
5. There is also brain atrophy so often seen in MS. This can't be explained only by lesions.
6. And lets not forget the emotional changes - nor the effects from medications we often forget to account for.
I'm sure we will know a great deal more about MS in a few short years. But for now, I think we all have to realize that there are many things we CAN know and many we just can't. Not only are the symptoms not specific only for MS - they're also different for each person. The tendencies are there, however, and Quix put together some great rules of thumb. Our bodies are so complex that, like me, many of you may have more than one disease process going on though.
Knowledge is power, so I never would discourage anyone from learning as much as they can about the disease. But since we don't have very reliable treatments for each and every symptom, it's often best to focus on what we can still do. Focus on the body parts that still work and that don't hurt. (I admit that list is getting a bit short for me) But it still is a blessing to be alive! I've had a severe case of pneumonia for the last week - going on 2 and I simply have to keep trucking - my kids aren't exactly little anymore, but my 19 year old NEEDS me and my almost 21 year old does too. She's pre-med wants to pursue Peds. They have so many scars from my abusive husband, their dad, that they truly do benefit from me hanging around longer. My doctor views them as my lifeline - they're what's keeping me alive - I love them sooo much.
Anyway - didn't mean to write a novel but I seem to do that I have to go to sleep before I fall face down on the keyboard! I'm sure I won't even know what I've written, but I'll try to make some sense of it tomorrow when I'm more awake and less sick (I hope) Lulled to sleep by the hissing of the O2 in my cannula. And my sweet little Schnoodle puppy curled up next to me. She's not so little anymore, but still lap dog material. Oh the joys!!
I wish you all blessings - may God bring the good things in your life to mind. Love, Jan
Cynical? Yes. Too many years of experience with doctors and illness and multiple dx. After a while, you can't help but feel the frustration of a pharmaceutical and insurance driven system with so many specialties focusing on the "small" picture that the "big" picture (the patient) gets ignored.
I don't want to restate the basics of the MS physiology / symptomology, but I'd like to add a few variables we can sometimes forget.
1. If you have the dx of MS - it doesn't mean you might not also have another as well. If not another disease state - perhaps a disorder, or symptoms that occur secondary to the MS itself. For eg., when you break a leg, your gait, balance, and other compensatory movements all lead to secondary aches, pains, and strains.
2. Those who've asked about fatigue. Don't forget that MS causes many things to be harder for us to accomplish than others. Depending on what is effected in your case, due to the location and the destruction severity of nerve conduction you have, involved activities will cause not only fatigue, but also the secondary injuries I mentioned above.
3. Cognitive difficulties aren't fully understood, but any slowing of nerve conduction can create in some, a slowing of cognition as well. Information from sensation is retrieved and stored more slowly.
4. There are deficits of different types. There are negative effects; where an ability, or function is taken away - such as lost eye sight, numbness, or paralysis. There are also "positive" effects; where a sensation is added, such as parasthesias, hyper-reflexes, etc. Has the myelin destruction caused a speeding up of impulses, or a slowing, or a total disruption? Has the damage gone past the myelin and destroyed the axon? Also, even if the myelin regenerates, which in RR, it often does - it is not the same as before. It is more fragile and subject to damage more quickly. It can "short" out as well. These can cause "non-typical" symptoms.
5. There is also brain atrophy so often seen in MS. This can't be explained only by lesions.
6. And lets not forget the emotional changes - nor the effects from medications we often forget to account for.
I'm sure we will know a great deal more about MS in a few short years. But for now, I think we all have to realize that there are many things we CAN know and many we just can't. Not only are the symptoms not specific only for MS - they're also different for each person. The tendencies are there, however, and Quix put together some great rules of thumb. Our bodies are so complex that, like me, many of you may have more than one disease process going on though.
Knowledge is power, so I never would discourage anyone from learning as much as they can about the disease. But since we don't have very reliable treatments for each and every symptom, it's often best to focus on what we can still do. Focus on the body parts that still work and that don't hurt. (I admit that list is getting a bit short for me) But it still is a blessing to be alive! I've had a severe case of pneumonia for the last week - going on 2 and I simply have to keep trucking - my kids aren't exactly little anymore, but my 19 year old NEEDS me and my almost 21 year old does too. She's pre-med wants to pursue Peds. They have so many scars from my abusive husband, their dad, that they truly do benefit from me hanging around longer. My doctor views them as my lifeline - they're what's keeping me alive - I love them sooo much.
Anyway - didn't mean to write a novel but I seem to do that I have to go to sleep before I fall face down on the keyboard! I'm sure I won't even know what I've written, but I'll try to make some sense of it tomorrow when I'm more awake and less sick (I hope) Lulled to sleep by the hissing of the O2 in my cannula. And my sweet little Schnoodle puppy curled up next to me. She's not so little anymore, but still lap dog material. Oh the joys!!
I wish you all blessings - may God bring the good things in your life to mind. Love, Jan
Hi quix,
Thanks..You are right when you said we have to be very careful on how we describe symptoms..It's hard sometimes (for me anyway)..My major issues are left sided..and then i get an exception of something on the right but they never persist like my left..what is amazing to me, and again I am not dx. with anything yet.Is that how symptoms can show up and only effect 1 spot, for example I get a tingling that i feel but only in my left big toe..or only in my right thumb..nothing else just that 1 digit..Whatever this is...it is weird!!! Thanks for your help.
Jib Jen
Thanks..You are right when you said we have to be very careful on how we describe symptoms..It's hard sometimes (for me anyway)..My major issues are left sided..and then i get an exception of something on the right but they never persist like my left..what is amazing to me, and again I am not dx. with anything yet.Is that how symptoms can show up and only effect 1 spot, for example I get a tingling that i feel but only in my left big toe..or only in my right thumb..nothing else just that 1 digit..Whatever this is...it is weird!!! Thanks for your help.
Jib Jen
Good to see you again.
Your question is at the very basis of what I was trying to explain.
You have symptoms on "both sides". This is "bilateral" and most people with MS have symptoms here and there involving both sides.
BUT, your symptoms are not "symmetrical" side to side. Think of the perfect symmetry of the two wings of a butterfly. Each spot on one side has an identical spot on the other side.
So the pattern of lesions you have IS consistent with MS.
Also, the likelihood that symptoms will get more symmetrical (same on both sides) increases as we move through our course and get more and more lesions.
This is true also of the lesions on the MRI of the brain. If the lesions are perfectly symmetrical it is a red flag to think about something other than MS.
quix
Your question is at the very basis of what I was trying to explain.
You have symptoms on "both sides". This is "bilateral" and most people with MS have symptoms here and there involving both sides.
BUT, your symptoms are not "symmetrical" side to side. Think of the perfect symmetry of the two wings of a butterfly. Each spot on one side has an identical spot on the other side.
So the pattern of lesions you have IS consistent with MS.
Also, the likelihood that symptoms will get more symmetrical (same on both sides) increases as we move through our course and get more and more lesions.
This is true also of the lesions on the MRI of the brain. If the lesions are perfectly symmetrical it is a red flag to think about something other than MS.
quix
Hi Quix,
I agree with everyone that you are a great help with explaining things for people.
I am in limbo (for something) but MS was noted in differential.
Let me add here and now I have migraines although only about 2 every 4 months..minimal..and I am on meds for them
My symptoms started in June 2009 with numbing, tingling, on left side. I also had cognitive issues and vision issues which prompted MRI of brain w/o contrast..came back with 20 T2 hyperintensities..
I have had normal EMG and another MRI of brain w/o contrast in Dec 2009 with no changes..and Lymes has been ruled out but no other tests at all.
My symptoms have always been on left side with 2 exceptions..one night my right thumb went numb and then came back but has pretty much been partially numb since.....
All my tingling and numbness of left side began to improve in January and then one night again while watching TV lying down my right hand went tingling and then my thumb and pinky went numb for a half hour and then returned to normal. Currently my prickling sensation in left hand has come back about a week ago.
I had an episode of twitches at night but I am unsure if this is related as well as few things that I am monitoring and unsure if I should see other doctor for....
So, because my symptoms were all left sided BUT happened on right but did not stay is it less likely as well to be MS?
My doc is taking me off my migraine meds.
Your guidance and input has been great
JibJen
I agree with everyone that you are a great help with explaining things for people.
I am in limbo (for something) but MS was noted in differential.
Let me add here and now I have migraines although only about 2 every 4 months..minimal..and I am on meds for them
My symptoms started in June 2009 with numbing, tingling, on left side. I also had cognitive issues and vision issues which prompted MRI of brain w/o contrast..came back with 20 T2 hyperintensities..
I have had normal EMG and another MRI of brain w/o contrast in Dec 2009 with no changes..and Lymes has been ruled out but no other tests at all.
My symptoms have always been on left side with 2 exceptions..one night my right thumb went numb and then came back but has pretty much been partially numb since.....
All my tingling and numbness of left side began to improve in January and then one night again while watching TV lying down my right hand went tingling and then my thumb and pinky went numb for a half hour and then returned to normal. Currently my prickling sensation in left hand has come back about a week ago.
I had an episode of twitches at night but I am unsure if this is related as well as few things that I am monitoring and unsure if I should see other doctor for....
So, because my symptoms were all left sided BUT happened on right but did not stay is it less likely as well to be MS?
My doc is taking me off my migraine meds.
Your guidance and input has been great
JibJen
COMMUNITY LEADER
Great topic!!!
I'd like to throw something into the pot, i think valid to the topic but feel free to correct me if i've strayed off topic :-) Autonomic nervous system dysfunction also seen in MS
http://www.pagepress.org/journals/index.php/ni/article/viewArticle/ni.2009.e4/737
I think tremors are interesting, internal tremor you feel it but its not visible could have various causes, not necessarily neurological, seen in MS. Intention tremor is indicative of lesion causation, seen in MS and is a neurological sx.
I'm interested in perceptions of weight, i'll explain: i feel my left leg is heavy, heavier than the right, it doesnt lift and move like the right. I feel my left doesnt flow when i walk, it stays closer to the ground, more straight compaired to the right. I wobble to the left, lean to the left when i walk but my right leg is used to compensate this. To look at me you'd assume its the right leg thats off, it lifts higher, pushes off the ground stronger etc and it looks a lot of the time like i'm limping on the right, i'm not though its all perception. The right is doing 1/2 the job of the left too, this tires and strains the right leg muscles, hip etc. So where does perception of weight come in? if i'm fatigued as well, then it sometimes feels like the weight of my body is too heavy to be carried by me, not just that pesky left leg.
I have circulation system failures that on the one hand could point away from MS (reynaud's, vein inflamation, vision changes) not unheard of in MS but more likely pointing away rather than adding towards. Does this fit into the Autonomic nervous system dysfunction box, i'm intersted in knowing more!!
Just something to add.
Cheers........JJ
I'd like to throw something into the pot, i think valid to the topic but feel free to correct me if i've strayed off topic :-) Autonomic nervous system dysfunction also seen in MS
http://www.pagepress.org/journals/index.php/ni/article/viewArticle/ni.2009.e4/737
I think tremors are interesting, internal tremor you feel it but its not visible could have various causes, not necessarily neurological, seen in MS. Intention tremor is indicative of lesion causation, seen in MS and is a neurological sx.
I'm interested in perceptions of weight, i'll explain: i feel my left leg is heavy, heavier than the right, it doesnt lift and move like the right. I feel my left doesnt flow when i walk, it stays closer to the ground, more straight compaired to the right. I wobble to the left, lean to the left when i walk but my right leg is used to compensate this. To look at me you'd assume its the right leg thats off, it lifts higher, pushes off the ground stronger etc and it looks a lot of the time like i'm limping on the right, i'm not though its all perception. The right is doing 1/2 the job of the left too, this tires and strains the right leg muscles, hip etc. So where does perception of weight come in? if i'm fatigued as well, then it sometimes feels like the weight of my body is too heavy to be carried by me, not just that pesky left leg.
I have circulation system failures that on the one hand could point away from MS (reynaud's, vein inflamation, vision changes) not unheard of in MS but more likely pointing away rather than adding towards. Does this fit into the Autonomic nervous system dysfunction box, i'm intersted in knowing more!!
Just something to add.
Cheers........JJ
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