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

[Janette2836]

Thanks Quix!  You have a way of making things clear.  Something tells me you were a fantastic peds doctor - you talk human talk not doctors lingo  :)
Thanks for sharing this.
Janette
Limbolander

[BobbyRay51]

Thank you for the detailed post.  What about burning sensations on different areas of the body that come for a few seconds to minutes, and dissapear and keep reappearing throughout the day?  I feel them in my legs, stomach,back, feet, and sometimes my arms.

[Quixotic1]

that will be ny next section of this discussion.  Hopefully tomorrow.

[skarey]

Thanks for that very helpful post.  So, since my sx are body wide, it is less likely to be MS?  This is confusing for me cause a lot of my sx are a little of each (bilateral, symmetrical, and one sided).  I feel like my range of symptoms do make MS less unlikely just cause I have SO many in all parts of my body.  For example... My foot is numb just on my left side.  However both legs feel weak.  Both my arms and hands hurt in the same places, but left arm is usually worse.  I feel I get burning on both legs as well but worse on left side.  What about sx such as brain fog, dizziness,heaviness, adn fatigue?  Cause you can't feel these sx on either side... it's just there.   My brain fog is REALLY bad.  Do MS sx seem to come and go from hour to hour or day to day?  That is very much how my sx are.  It seems everyday brings a new group of sx.    Like yesterday my brain fog was bad, but didn't notice much else.  Today my inner thighs (both sides) are burning and my arms hurt.  These patterns don't really go with MS.  Does it?     I'm still a bit confused, being that my symptoms are everywhere..... Would this definatley point to something Systemic???  
  Thanks for the help.
  skarey

[Quixotic1]

In the next section I'm going to talk more about the "body-wide" or global symptoms and the fleeting, ever-changing symptoms.

Quix

[skarey]

I look forward to it!  Did you get my message??
  Thanks for devoting your time to this forum and helping everyone.  Thanks!!

[sllowe]

Makes perfect sense! YOU are so GOOD to us!

I think I'm an example to one of your points w/the tingling and numbness in both hands and wrists (though I had no clue at the time an attack would follow).  My largest lesion was seen and is within my spinal cord.

Thank you so much  Doc Q.  We have so much to learn in advance of actually understanding MS and this is yet another important educational piece for us to learn from so we understand better.

-Shell

[Lulu54]

Wow! I have to say I understand  this a bit more thanks to your thoroughness in explaining this lesson to all of us.  Now if only I can remember it! LOL

As always,
Lulu

[Lulu54]

And you will copy this and put it into a HP for easy reference, right?

[goofysmom1]

Another great explanation, Quix!  I agree with Lulu - this would make a great HP.

Thanks so much for all you do!

Chrisy

[truelove47]

hi
I want to tell you another story

I woke up one morning and I lost the use of both my hands.  I was so surprized and scared because i did not know ms hit your upper body,   duh!!!l  My husband called my
neuro and he put me in hospital for a course of steroids. This happened about 1990
My neuro explained there was nothing wrong with my hands, but it was the signal coming from my brain to my hands and that some lesions were activating.
That is when I learned that what ever part of the brain that has a lesion that controls a  that part of our body acts up it causes a problem.  Hope this makes sense

end result+ took a good 6 months of hard work PT  and I got the use of my hands back.

A very scarey situation                                             Linda

[samandsprout]

Just wanted to say thank you for yet another informative post!  As a newbie here and a limbolander, all of the information I am finding here is like a godsend.  I just want to learn as much as I can, because I feel like my neuro really doesn't have the right idea about MS.  I think all neuros should have to read forums like these to see the reality of what patients out there experience.

[LATW]

Thank you! That was very helpful. My right side is my goofy side!

LA

[jensequitur]

I loved your metaphor about the paint splatters!  That was perfect.

[Sarahsmom46]

I see a new HP brewing here.  The explanation was very easy to understand and follow.  I can't wait for your second installment.  

You are such a good teacher.  Thanks.

Julie

[Quixotic1]

I just read this and I am not happy with it.  I gave the impression that one could never have symmetrical symptoms and that is not true.  Like Shell said, she had symmetrical numbness in her hands due to a large spinal cord lesion.

I also mispoke when I talked about people with tingling in hands and arms and legs and feet.  that could happen in Transverse myelitis.  What would be near to impossible is paresthesias in both hands and feet starting at the same time.  That would require 4 separate, mirror-image lesions and would be quite improbable.

So, this is not at all ready for prime time.

I still think the discussion is good, but I don't have it yet.

But, I am going to continue with discussions about fleeting and dancing around sensations - those that come and go and change all day, like Karey and BobbyRay complain of.

In the meantime I welcome the critical comments of those with a diagnosis.  How many of you feel that your symptoms came on in a very symmetrical pattern, such that there isn't a great deal of difference between them?

It could be that I am making distinctions where none are appropriate.

Quix

[jensequitur]

Hmmm...  I think what you said about symmetrical symptoms is very true.  I often have symptoms on both sides, but they're different - I tend toward spasticity on the left, and weakness on the right.

However, I do have some symmetrical stuff.  Mostly in the middle of my back, where it tingles and buzzes right down my spine.  I also get a rhythmic clenching of my stomach muscles, that sometimes feels like a twitch, and sometimes more like a spasm.  I can't tell whether it's one side or the other, but it feels like all of them at once.

[keddy1221]

Very informative Quix, thank you very much for taking the time to explain all of this.  I look forward to your next post about global and fleeting symptoms.

Kelly

[CheeserNurse]

As a nursing student, who has taken several anatomy and physiology courses, I have to say your explanations here are wonderful!!! Great information here!!!  I am also seeing a chiropractor who specializes in neurology and he has helped me with my symptoms tremendously. I would suggest some of you look into it. It's amazing!

Thank you,

~Aleah

[sunshine8]

Great explanation. It has really helped me to understand why I am finally dx and what the doctors were saying when they narrowed down the differential lists based on types of symptoms and lesion appearence.

I have what I call extremity symtoms (symptoms) and systemic ones. Extremity symptoms would be my hyper reflexes, which are primarily in my right lower leg, but also appear mildly in my left lower leg. I have had hot patchs appear on the back ofmy thigh off and on for 5 months now, but only in the left thigh. I have shooting electrical pulses in the right foot and a left hand tremor. I also have decreased sensation in my left foot, but it is much worse in my right foot. In the right it stretches up above the ankle. I also have dcreased sensation in my right hand, not my left is fine.

Systemic symptoms are my balance issues, dizziness and fatigue. I call them systemic because they don't affect one side, but my whole body.

Apparently the fact that the majority of my systemic symptoms are one-sided helped rule out mimics and lend evidince to the MS dx. It was one of the things that the multiple Neuro's ratled off that I caught.

Thanks for the helpful information and I can't wait for the second part.

-Amy
dx RRMS Oct 2008

[sunshine8]

Sorry, that ending part should say exterminity symptoms and not systemic. It must be my brain fog rolling in. :)

Amy

[Eyesnlegs]

Thank you so much for this it will be of tremendous help at my next neuro appointment and explains perfectly some of my sx too.

You are a star!
Pat
x

[PastorDan]

Another outstanding explanation, dear lady.  As another respondent noted, there are some symptoms that we really can't define as having a side, such as brain fog, vertigo, etc.  However, when I think about the other odd sensory things I've experienced, I think they're all one sided, at least at any particular time.  Tremors in head seem balanced, though, and I have them in both hands, but not always at the same time or under the same conditions.

The exception I've yet to understand is my eyes.  My visual disturbance (a haze, or decrease in intensity, usually) has been consistently in the upper right of my field of view, except for the one day I later had what I knew was migraine aura.  On that day, it was center left, but the migraine "image" showed up in the right eye, dead center of that eye's field.

Then there's the eye pain, and this is where there's both one-sidedness and symmetry.  Nearly every day I have pain behind the eye for at least part of the day, pain that feels like bruising on the back side of the eyeball.  Some days it's left, some days it's right, but recently there have been episodes when the pain is behind both eyes.  However, in those instances, the pain usually is less severe.  Usually.  It seems like there's only a certain amount of pain to spread around back there, and sometimes they are forced to share.  Scripture tells us that we are "fearfully and wonderfully made."

[essdipity]

I've always been a bit of an odd duck, and guess I still am, MS-wise.

My very first symptoms of something or other neurological was a chapped, sore feeling on the insides of both knees. That came and went for a long time. Since then I've gone through stabbing pains in both feet. The longest-lived thing I've had constantly for almost 2 years, burning on the skin of my legs and feet. For this one, the right side has consistently been worse. That's about all of the reasonably symmetric stuff.

A past neuro suspected cerebellar degeneration, though I've never known how this correlated, if it did, with MRI images. Also don't know to what extent this could affect both sides.

Current neuro insists I have small fiber neuropathy in legs and feet, in addition to more central things. I think he's fixated on that, so he comments that I experience dfferent things on touch tests than what I really feel. However, he did order nerve conduction tests (and does an EMG automatically go with this?). That was last summer. Somehow I don't have the reports from these tests, but was told they were normal. Therefore, I don't see how I could have peripheral stuff in legs and feet.

I've had 3 bouts of vertigo (including now). Have had severe pain across low  spine. Butt numbness. Have had left-sided mouth, tongue and face symptoms. Not all these at once, though! Strength tests show weakness on both sides, not symmetrical. Tinnitus on left. Floppy bladder. Esophageal problems in testing phase. VNG test coming Monday.

Brain MRIs, 6 or 8 of them, consistently significantly abnormal and worsening, but not typical of MS, though within differential. Have had 2 cervical and 1 thoracic MRI (this last in '06). All have been normal. I don't know whether recent symptoms will cause neuro to order more when I go this next July.

Sorry to rehash all this, but I don't know how to interpret the things that are or have been relatively symmetrical, based on what you've written.

ess

[Quixotic1]

I think all of your comments have been very helpful to me.  Clearly most people, but not all, have had an asymmetrical onset to most of their symptoms.

In the HP I need to first talk about generalized or systemic symptoms like fatigue, cog fog, and heat intolerance.  Vertigo can fit there or it can have a "sidedness" to it.  We may usually list or stumble to one side or the other.

The kind of symptoms that I was talking about in my first post pretty much were the symptoms that can "lateralize."  These are almost exclusively sensory touch, motor and special sensory (vision, hearing, taste, but not so much smell).

When a person has very symmetrical sensory or motor symptoms, like ess, we can pretty much know that the lesions are in the spinal cord.  We have read this before, but the cord is the only place where a lesion could encompass exactly the same part of each side.  This is much less likely in the brain, where the sensory and motor regions are more separated from each other.  And, there is always the off-chance that two separate lesions "could" hit in the exact same spot on each side of the brain or cord at the same time.

Okay, using those clarification I can write the first part of the HP.

Quix

[willowwoman7]

Thanks so much for the wonderful information. I copied it so I can print it out and make my husband read it. He is still convinced that all I need to do is exercise....sigh. My daughter (25 yrs old) just had an MRI to check her for MS. She's been having tingling in her midriff and stumbling. Does this tend to run in families?

[SickMomma_PDX]

So, when my prickling started, it started first in my left hand, then spread up to my left elbow and started milder but present in my right hand. Then my left foot/leg started up too, although I'd already had a kind of numb sock that reached up to mid-calf on it for a long time. But never this tingling that turned to prickling that turned *painful*.

Is this too bilateral to be MS then? It's definitely worse on my left side, but I do have it on my right side. And there was on the one night that I could feel the painful prickling (man, it felt like I imagine being in an iron maiden would feel, with the poky bits just in certain places) even on the edges of my face around my hairline (including the back of my neck).

I'm sorry to beg for interpretations! I've been a medical mystery for two years now, and I'm just so tired of it and of having my symptoms get worse without anyone having a fix on what exactly is wrong with me.

Thanks!

Oh, and for a newbie: What's an HP? :)

[shoshin]

Well, I think I am a big exception on the symmetrical symptoms because most of my numbness, paresthesias, and weakness is symmetrical and started on both sides at the same time. Even the tingling in my face is symmetrical. Tingling and numbness started in feet, later in calves, face, hands, thighs, weakness in arms, etc.

This probably has something to do with why they thought I had peripheral neuropathy for such a long time. I have some asymmetrical things though and the left hand/arm seems worse, although I have the same type of symptoms on both sides (they put that down to my being right-handed).

FWIW, I do have several cervical spine lesions which were all described as "central" in some way and which were big enough to show up on an open MRI.

sho

PS for SickMomma: an HP is a health page. You can click on the yellow icon in the upper right to see them.

[jed9999]

I'm hoping that your eye pain is actually a good thing. I had it 24/7 for literally at least 15 years and not too much more. Then it stopped for good, other than an ocassional return for a day or so every few years. Not too shabby!

Of course we all know ANYTHING CAN HAPPEN with MS, and each case is different, but wouldn't it be nice if eye pain were all it ever was? I'm wishing that for you! I've had a pretty slight course of MS for 36 years and while I feel like I've seen it all to a slight degree, as MS goes, it has been pretty easy. It's amazing what we can get used to when we make up our minds there is no alternative (I had no DMDs.)

Cheers! Jane in Indiana (currently undergoing flair from bronchitis, however)

[Quixotic1]

As I am coming to realize, the disease can be more symmetrical in some people.  One source I read, but can't remember where stated that symmetrical symptoms are more  common in PPMS.  Do either of you actually suspect that you have PPMS rather than a relapsing MS?  

I am going to hold on this until I clarify some points.

But, lets look at other symptoms that tend to point away from MS.  In order, to talk about these things we need to understand about what happens in a demyelinating plaque.

MS strikes randomly in the central nervous system.  If we talk about the classic autoimmune, inflammatory lesions (the T2 hyperintensities) then we have an attack on the myelin shealth of a group of nerves.  The myelin is damaged and there is an inflammatory reaction that happens.  This is NOT an "irritation" but a place where the insulating and protecting nature of the myelin is disrupted.  It is damaged to the point that the signal gets intterupted.  The signal is slowed in its arrival to the brain (in sensory nerves) or out to the nerves of the body (in the case of motor nerves).

In the definitions of what constitutes an attack in MS it is said that the symptoms must last for at least 24 hours.  I have read the opinions of some MS experts who say that they have found few people with known MS whose symptoms are this short.  Some even propose that the definition be changed to be 48 hours of minimum symptom duration.  If you think about it, this makes sense.  When something is damaged in the body, it usually takes longer than a day to heal, with the exception being a small abrasion to the cornea of the eye.  Most symptoms in MS last days to weeks and, for some of us, even months.

When they say a symptoms must be present for a full 24 hours it can mean continuously present or repeatedly present in exactly the same spot.

A group of symptoms that doesn't match this description of areas of real damage that take time to heal are those that are fleetingly here and then gone.  Many people come here and describe brief paresthesias lasting just seconds or minutes and then reappearing in other parts of the body - literally dancing around.  This pattern just does fit the known problem of a truly damaged nerve, but more of one that is more irritated or irritable.  The example of a L'Hermittes that is in a different place almost every day or every hour.  The lesion is where it is.  It does not shift, though it may enlarge or shrink.  The change in symptoms is measured over days - usually many days - but not in seconds or hours.

Again, these people are most likely to be written off as anxiety or just being too watchful of normal body sensations.  We all have brief, barely perceptible sensations all over all of the time.  Most of us ignore these, but if we are worried about symptoms that seem neurological, we may focus and amplify the very fleeting ones.  I don't believe that all people with these dancing, shifting and fleeting sensations are anxious, but I think it does not fit the pattern of MS lesion formation and symptoms.

Another group of symptoms that aren't very "MS-like" are global, or all-over, symptoms.  This again refers to symptoms like paresthesias and weakness that can have a sidedness to them.  When a person says I tingle (burn, itch, hurt, am numb, etc) "all over my whole head, chest, back, arms and legs" they are unlikely describing MS.  If you think about what this means, it is this:  you would have to have plaques on all the sensory touch nerves of the body.  This just doesn't happen.  Again, it indicates a problem more widespread in the body - like a toxin, infection, deficiency, radiation.  It has to be something that is/can attack all of the nerves equally and at the same time.  But, even here, I have to say that some people are not very able to distinguish things well or express themselves well.  We have to be careful how literally we take them.

Three weeks ago when I literally hurt ALL OVER - even my hair hurt - it was true.  I didn't have anywhere that didn't hurt, but it wasn't my MS, it was influenza (infection).

So these are the other two symptoms that seem to me to be indicating something other than MS.  Again, comments from the peanut gallery.  Am I off base?

Quix

[Lulu54]

It looks like I'm the first of the peanut gallery to check in - the explanations you give about global symptoms makes perfect sense.  Same for the fleeting symptoms.  

The more I understand about how the MS speaks in the body, the more I realize how few attacks I have experienced - this despite having a brain riddled with lesions .

My next question though - the twinges and pains (paresthesias) that I have that aren't attacks, are they just my CNS pinging a bit?  Its like it is misfiring  in my body, but it doesn't get extreme or consistent enough to call it an attack.  

I really am paying attention in class,
Lulu

[essdipity]

I'm quite sure I don't have PPMS. For a while I was a little worried about secondary, when for the first time all symptoms failed to remit, but now I know more about this blasted disease.

ess

[shoshin]

I do not have obvious acute relapses. When the neuro who dx'd me started talking about MS, I was convinced that I had PPMS. However, I was later triggered to recall an incident several years before I started having ongoing problems that presumably was a relapse (couple weeks of mild sensory stuff that resolved completely).

So I don't think I have PPMS, but I did read a lot about it in the beginning and some of the articles talked about something called single attack progressive (SAP) or transitional progressive (TPMS), in which there is a single attack, a gap, and then progression. So I think that is closer to what I have (although I think there was some mild resolution of symptoms after what turned out to be the beginning of the ongoing thing so it's a little hard for me to say for sure; nothing seems to happen to me abruptly). Apparently, the course of people with a single attack and then progression is closest to PPMS.

I do have some asymmetrical stuff. It is mostly the right leg that jerks and where the knee wants to give way. I think my proprioception is worse in the left. The numbness, paresthesias, and weakness seem about the same. The PT said I could use a cane in either hand since there doesn't seem to be much difference between my legs.

The last time my neuro said anything about this, he said he thought I was having subtle relapses with a lot of residual deficits. How that is different from progression with plateaus and the occasional slightly better period I am not sure. He also said I may be transitioning to SPMS, but I couldn't really see that as it doesn't seem different in its patterns from before. I feel more like the iceberg has finally come up from under the sea and now everybody else can see that there is a problem.

Maybe the symmetry is more related to spinal lesions as you suggested. I think maybe they are supposed to be more common in PPMS. Anyway, that seems to be mainly what I have. My last brain MRI report starts out "Minimal bihemispheric findings of multiple sclerosis are again identified."

sho

[essdipity]

This is most interesting. It almost sounds as if you were CIS, then moved to SPMS, skipping the RR part.

It seems these categories are basically pigeon holes where we get 'filed,' rather than hard and fast rules. There may be a lot of wiggle room that's not often reported on, to save confusion.

I know there's a theory among some MS researchers that PPMS simply omits the remitting stage. However, PP seems less a disease of inflammation and more a disease of atrophy. That might account for the fact that these people often have fewer white matter lesions than the general run of MSers. And I too have heard that spinal lesions are more common in that group.

As far as I know (which isn't very far), I have no spinal lesions, despite several bilateral/symmetric issues.

ess

[biowham]

Quix, what you write makes sense to me.

FWIW, I started only on the right side (foot), but fairly quickly (in a couple of months?) started developing paresthesias on the other side, too, and that's how things are now. My sensory symptoms are ALWAYS in the same places. There are a couple of places where buzzes have appeared only briefly and then vanished, but everything else is repeated. Lhermitte's is not there all the time, but when it is there, it is also always in the same places.

My weakness is primarily on my right side.

My hyper reflexes are primarily on the right, although over the past year, my left leg has played catch up with my right at the patellar reflex and I think surpassed it on this last neuro exam I had. That thing just flies up now, whereas before, it was clearly a normal 2.

I've never had an "all over" feeling of burning, itching, pain...any of that. And I have to admit, when I read posts and people describe their symptoms in that way, my first thought is, "Well, that's not MS."

Bio

[Quixotic1]

This has been a good learning post for me.  I think the global, all-over, and fleeting/dancing around complaints are pretty solid.  The symmetrical thing is more fluid and I suspect it is a spectrum into which (like ess commented) the doctors try to pidgeon-hole us.  The more symmetrical symptoms are more likely spinal.  I do think they are at one end of the curve and are more "uncommon."  Thus they might delay diagnosis unless they show the full Transverse Myelitis signs.  But, still it would seem that there would also be some asymmetry with regard to cranial nerves within the brainstem.

When I write up the HP I will be less "definite" on this topic, but it needs to be discussed as a feature that may make the diagnosis more difficult.

Bio - you described perfectly the point that after a period of time with the disease, the asymmetrical symptoms can become much more symmetrical.

And again, MS is definitely a disease that we expect to be "bilateral."

I think I can work on an HP with this now.

Thanks, all!

Quix

[CareBayer]

Thanks for the clarity. Most of my symptoms are asymmetrical (paresthesia), but some are systemic (tremors, spasms). They appear all over my body. The only symptom I have had that does not go away is the tremors. Mostly resting, but now they are becoming more intentional in my left hand and arm.

I have been having conversations with more people who have MS. They would explain there symptoms and I noticed the duration of there's and mine were different. Many would have isolated areas affected (like numbness in legs lasting days to weeks) where mine would come and go with the exception of the tremors.

As my ex neurologist told me I have too many symptoms which does lead me to thinking is this something else other than MS which I am leaning more towards. Something more systematic since it seems like my whole body is affected and having some symptoms that are not usually associated with MS. I asked to be tested for Lyme, but my dr refused stating I dont live in a area usually associated with Lyme. I told him years ago I would break out in strange rashes/hives but it wasnt the bulls eye rash and had come down with Bell's Palsey at 11 which is one of the first symptoms of Lyme.

Thank you so much for this post.

[Quixotic1]

I agree with you.  It's not that you have too many symptoms, but that they seem to behave in a way that is not so suggestive of MS.  MS does not cause a resting tremor, so they say.

Have you wandered over to the Lyme forum and discussed your history with them?  Our contacts over there are Wonko, Speechgeek, Hope(#?) and Amyloo.

When I was practicing in Nevada I had a girl with a pretty typical rash and wanted to send the ELISA for Lyme.  I was told there had never been a case in Nevada.  Her test was positive.  Turns out she had gotten the tick bite in the California forest right on the border.  Honestly now, do you think deer or the ticks that ride them have any clue or resect for a state boundary?

Little story.  Late one summer when I was newly practicing peds on the South Side of Chicago (the Baddest part of town...  gotta love Jim Croce)  a girl came in from the park with severe abdominal pain and muscle cramping.  I examined her and took a good history.  Then because of my years in the Arizona desert on the Indian Reservation had no problem diagnosing a black widow spider bite.  So I admitted her and treated her for it.  But, then I was laughed at in morning rounds, because Chicago does NOT have black widow spiders.  They can't survive the winters.  

So, chagrined, I called a poison center conference call of people from all over the US.  I presented the case and they unaminously said it HAD to be a black widow bite.  So then I called the Fields Museum of Natural History and talked to the curator.  He said that every year they get a dozen or so black widow spiders brought in for identification.  They piggy-back on on shipments of stuff, set up house-keeping and die off in the winter.  I was vindicated.  But, the story shows that odd things can happen in places where they aren't supposed to happen.

Get a Lyme test!  Including a Western Blot.

Quix

They eventually learned not to laugh at me in Morning Rounds, lol.

[CareBayer]

Thanks, for sharing your story with me. Im going back to my PCP next week and going to be very stern on getting the western blot test. I've checked the Lyme forum before but havent posted there. I think its time now. Once again thank you.

[Octarine]

bump

[ShoreMom]

Thanks for the very informative post.

I started out about  6 months ago with numbness and tingling in both feet, legs and below my belly button.  At that time the numbness was a little stonger in my right foot.  Now six months, 4 MRI's and an LP later, I am dx'd as CIS. The sensations/numbness in both legs and below the BB have remained but the stronger numbness in right foot has moved to left foot as of 3 months ago.  I do have a 13mm T spine lesion and several on my brain.  

Thanks again, and I look forward to reading the HP listing.

Rosanne

[opie74]

"But, still it would seem that there would also be some asymmetry with regard to cranial nerves within the brainstem"

This is me.  The left eye drags around and causes double vision.  sometimes it even "sticks" and then "pops back" when I look down.  The right cheek and upper lip droup.  The right jaw, ear, neck ache.  I only have cranial lesions, and the effects are verry non semetric.

[skarey]

Thanks again for this post.  So I'm guessing that since my sx are everywhere head to toe and fleeting, that my dx is most likely not MS.  With my normal mri's and normal neuro exam (besides brisk/hyper reflexes) can I comfortably lay this MS dx to rest????  My lyme test was neg however they are retesting it with WB.  Any other suggestions?? I appreicate your opinion.
  skarey

[chezbug]

So, say if I'm having the tingling/burning sensation but I only feel it on my left side (left hand - middle finger really, left foot - 2nd toe and part of my scalp - on the left side) would that sound like a symptom of MS?  I have numbness, weakness and stiffnes on both sides, but this tingling/burning sensation that comes on intermittently throughout the day only happens on my left side.

Thanks for your input,
Chezbug

[Quixotic1]

bump

[Lulu54]

thanks for bringing this to the forefront again.  There is a wealth of information here and it was a great refresher course for me.  It's amazing what I forget in one year's time!

[supermum_ms]

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 (inflammation), 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

[jibjen]

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

[Quixotic1]

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

[jibjen]

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

[BOK2Bjan]

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