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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
Yes, I did test positive for Lyme and currently undergoing treatment for it.
I was assessed by a Lyme literate doctor, who sees no evidence of MS after performing the neurological test.
I also went to another neurologist to get a second opinion. After assessing me, he also saw no typical evidence of MS. My reflexes and movements are at 100%
I was assessed by a Lyme literate doctor, who sees no evidence of MS after performing the neurological test.
I also went to another neurologist to get a second opinion. After assessing me, he also saw no typical evidence of MS. My reflexes and movements are at 100%
1 Comments
Hi Slabp9,
I relate to your story a lot, though my symptoms/problems have just begun this year. I am curious about your MRI results that led to your previous diagnosis of MS. You stated that they detected 5 lesions on the MRI. Are lesions associated with Lyme Disease?
Lastly, have you noticed improvements since receiving treatment for Lyme Disease?
Thank you for your time.
-Amber
I relate to your story a lot, though my symptoms/problems have just begun this year. I am curious about your MRI results that led to your previous diagnosis of MS. You stated that they detected 5 lesions on the MRI. Are lesions associated with Lyme Disease?
Lastly, have you noticed improvements since receiving treatment for Lyme Disease?
Thank you for your time.
-Amber
COMMUNITY LEADER
Hi slabp9 and welcome to our little MS community,
Can you please make sure you create smaller paragraphs like i have done, people with MS commonly have visual and or cognitive issues that make reading and comprehending large blocks of text more difficult and sometimes impossible - ta :D
Q:....how is it possible that my FIRST symptom ever occurred in BOTH feet and it has continued. It’s never happened to one leg/foot, always both. If the nature of MS attacks is fairly random then how is this possible?
A: I think it's possible that you are misunderstanding 'random' within the context of MS, whilst it's not 'typical' for MS to cause bilateral symptoms, the bilateral leg numbness and hug you've experienced are associated with spinal cord lesions. MS spinal cord lesions are more typically small and cause unilateral signs down one side of the spine BUT Transverse Myelitis (TM) cause larger lesions which are typically large enough to cut across the spinal cord causing bilateral signs.
TM can be a stand alone diagnosis or can develop into MS, ON can also be a stand alone diagnosis or develop into MS. The fact you have experienced both these same 2 particular issues, for a solid block of time and after they first occurred, this symptom pattern would be consistent with RRMS as it is has a relapse remitting pattern.
If you also experience a return of these symptoms when you are active or get over heated ie summer, infections, exercising etc and after resting and cooling down, then that too would be consistent with MS pseudo relapses.
Q:It’s not a tremor (that occurs in MS). My doc said it’s anxiety because MS ‘can’t cause a symptom in both hands at the same time’. So why didn’t he become alarmed that all my numbness attacks have been symmetrical?!
A: It's possible that since your diagnosis of MS you are additionally experiencing some health related anxiety, MS does cause different types of tremors but anxiety related tremors actually behave very differently to neurologically caused tremors. You may not of been aware but your neurologist would of been observing you through out the appointment so it's possible your tremor behaviours and description were actually more likely consistent with the symmetrical psychological tremors.
With out further MS specific diagnostic information, I honestly couldn't say if something else could of cause the abnormal evidence that you have, MS is not diagnosed on just your symptoms alone but the type of symptoms and the symptom pattern would be very suggestive of MS.
If you are having serious doubts about your diagnosis, you wouldn't be alone, it's actually quite common, sometimes it can help you feel more accepting of the diagnosis, if you get a second opinion to confirm your diagnosis of MS is correct, worth considering if you have true concerns.
Hope that helps
CHeers.......JJ
PS would you mind starting a new question, this is quite out of date and many of the people on this one are inactive now..ta
Can you please make sure you create smaller paragraphs like i have done, people with MS commonly have visual and or cognitive issues that make reading and comprehending large blocks of text more difficult and sometimes impossible - ta :D
Q:....how is it possible that my FIRST symptom ever occurred in BOTH feet and it has continued. It’s never happened to one leg/foot, always both. If the nature of MS attacks is fairly random then how is this possible?
A: I think it's possible that you are misunderstanding 'random' within the context of MS, whilst it's not 'typical' for MS to cause bilateral symptoms, the bilateral leg numbness and hug you've experienced are associated with spinal cord lesions. MS spinal cord lesions are more typically small and cause unilateral signs down one side of the spine BUT Transverse Myelitis (TM) cause larger lesions which are typically large enough to cut across the spinal cord causing bilateral signs.
TM can be a stand alone diagnosis or can develop into MS, ON can also be a stand alone diagnosis or develop into MS. The fact you have experienced both these same 2 particular issues, for a solid block of time and after they first occurred, this symptom pattern would be consistent with RRMS as it is has a relapse remitting pattern.
If you also experience a return of these symptoms when you are active or get over heated ie summer, infections, exercising etc and after resting and cooling down, then that too would be consistent with MS pseudo relapses.
Q:It’s not a tremor (that occurs in MS). My doc said it’s anxiety because MS ‘can’t cause a symptom in both hands at the same time’. So why didn’t he become alarmed that all my numbness attacks have been symmetrical?!
A: It's possible that since your diagnosis of MS you are additionally experiencing some health related anxiety, MS does cause different types of tremors but anxiety related tremors actually behave very differently to neurologically caused tremors. You may not of been aware but your neurologist would of been observing you through out the appointment so it's possible your tremor behaviours and description were actually more likely consistent with the symmetrical psychological tremors.
With out further MS specific diagnostic information, I honestly couldn't say if something else could of cause the abnormal evidence that you have, MS is not diagnosed on just your symptoms alone but the type of symptoms and the symptom pattern would be very suggestive of MS.
If you are having serious doubts about your diagnosis, you wouldn't be alone, it's actually quite common, sometimes it can help you feel more accepting of the diagnosis, if you get a second opinion to confirm your diagnosis of MS is correct, worth considering if you have true concerns.
Hope that helps
CHeers.......JJ
PS would you mind starting a new question, this is quite out of date and many of the people on this one are inactive now..ta
2 Comments
Hi all, sorry about the long paragraphs. Just want to give you an update.
When last year I mentioned the arm vibration/shaking to my neurologist he said the pattern didn't fit a neurological asepect and said it must be anxiety. I have later seen a psychiatrist and psychologist and according to them it didn't fit an anxiety patter either. So I went back to my neuro last month, and he said, Hmm interesting, well then it must be MS.
I also reported to him how I've been feeling. Which absolute crap. Almost each day, something bothers me- it is mainly sensations not actual physical symptoms. I haven't had a clear relapse- such as ongoing numbness or tingling in a very long time.
It's odd sensations, like feeling like I'm floating, feeling paranoid, awful severe headaches, perception issues-sometimes things seem like they're closer but they're actually farther. My whole body feels weak, arms and legs. And it comes and goes throughout the day. Not weak as in I can't lift, just an odd weak, hard to describe. I have buzzing in my ears, bone pain in my ribs, breastbone, wrists and knees. As mentioned before since I was 18, I still have palpitations and heart flutters, pressure in my head, excessive yawning attacks- I feel like my blood pressure or sugar is low but they're not.
It's interesting because I convinced my doctor to prescribe me Doxy for Lyme and while taking it I experienced even more awful sensations(which is a common Herx reaction) After I stopped taking it, I actually felt better. Now I need to take a break before taking another round.
When last year I mentioned the arm vibration/shaking to my neurologist he said the pattern didn't fit a neurological asepect and said it must be anxiety. I have later seen a psychiatrist and psychologist and according to them it didn't fit an anxiety patter either. So I went back to my neuro last month, and he said, Hmm interesting, well then it must be MS.
I also reported to him how I've been feeling. Which absolute crap. Almost each day, something bothers me- it is mainly sensations not actual physical symptoms. I haven't had a clear relapse- such as ongoing numbness or tingling in a very long time.
It's odd sensations, like feeling like I'm floating, feeling paranoid, awful severe headaches, perception issues-sometimes things seem like they're closer but they're actually farther. My whole body feels weak, arms and legs. And it comes and goes throughout the day. Not weak as in I can't lift, just an odd weak, hard to describe. I have buzzing in my ears, bone pain in my ribs, breastbone, wrists and knees. As mentioned before since I was 18, I still have palpitations and heart flutters, pressure in my head, excessive yawning attacks- I feel like my blood pressure or sugar is low but they're not.
It's interesting because I convinced my doctor to prescribe me Doxy for Lyme and while taking it I experienced even more awful sensations(which is a common Herx reaction) After I stopped taking it, I actually felt better. Now I need to take a break before taking another round.
As it has now been one year since your MS diagnosis, it would be typical to get a follow-up MRI and neurological exam to see how you are doing and what kind of disease progression or stasis has ocurred. This is essentially standard of care for this chronic illness.
Has this happened? Have you been on any disease-modifying drugs? Did you test positive for Lyme? I'm a bit confused.
Has this happened? Have you been on any disease-modifying drugs? Did you test positive for Lyme? I'm a bit confused.
"My question is, how is it possible that my FIRST symptom ever occurred in BOTH feet and it has continued. It’s never happened to one leg/foot, always both. If the nature of MS attacks is fairly random then how is this possible? I understand that after years and years of having the disease one might have enough lesions to cause symmetrical attacks. But the first symptom?"
My first relapse, 20 years before my diagnosis, was characterized by bilateral foot/leg numbness. MS attacks the central nervous system. This means that the range of symptoms is huge. Lists of symptoms include those that occur more often but are by no means comprehenssive.
One housekeeping note, many of our readers have visual issues that make reading large blocks of tex impossible. In future please break your posts up into smaller paragraphs with space in betwen. Thanks.
Kyle
My first relapse, 20 years before my diagnosis, was characterized by bilateral foot/leg numbness. MS attacks the central nervous system. This means that the range of symptoms is huge. Lists of symptoms include those that occur more often but are by no means comprehenssive.
One housekeeping note, many of our readers have visual issues that make reading large blocks of tex impossible. In future please break your posts up into smaller paragraphs with space in betwen. Thanks.
Kyle
I was recently given an official MS diagnosis in August 2015.
It all started in the summer of 2010 when one morning I woke up with numbness in BOTH of my feet (the next day it spread to my calves). It lasted about 2 weeks and completely went away. Of course I became alarmed, I went to the doctor and he said it's probably due to uncomfortable shoes I wear to the gym.
In the fall, I started feeling a cold/burning sensation in BOTH hands/fingers. At the time I used to type a lot of notes during lectures and the doc said it was 'probably' Carpal Tunnel. This symptom never came back.
The following year (2011) I experienced the same type of numbness in BOTH my legs (all the way from toes to buttocks). It occurred 2 times that year. I also started feeling tingling going from my toes all the way to my waist but ONLY when walking and of course in BOTH legs. This sensation would come and go, meaning I'd experience it one day and not the other but a few days after. Pretty random. Then the doc sent me for a test that measures your muscles/nerves' response to electrical impulses and the results showed nothing. I still experience this odd tingling til now when I walk and my MS specialist said it doesn't sound like MS (so until this day I don't know what causes this).
In January 2012 I started feeling ‘odd’. I had unexplained anxiety, heart palpitations and pain in my knees and thighs. I just didn’t feel like myself, I kinda felt weak and my heart was constantly pounding but all bloodwork and ECG came back normal. Eventually, after about 3 weeks it all went away.
In April 2012 I had pain behind my left eye and my vision seemed super bright but at the same time covered by a shadow (that's the best way to explain it). I was referred to an eye doctor at the hospital and he told me it’s ‘most likely’ Optic Neuritis. After about a month the grey shadow went away but I experienced the unusual brightness until June. At that point I was not referred for MRI and my doctor didn’t seem concerned. He said ON can just happen.
In the fall of 2012 I once again had numbness in BOTH feet for 2 weeks and a month later numbness in both legs. Having the numbness never gave me any difficulty walking nor did it make me fall/stumble/lose balance. It was just an uncomfortable sensation.
2013 was a good year, I don’t recall having any problems with numbness. However I ended up in the ER, because I felt ‘weird’. For a few days I didn’t feel ‘right’, it didn’t feel like anxiety though. Three days later I woke up with an ‘empty’ feeling in my stomach and I felt like I was gonna faint but I didn’t. Bloodwork and ECG came back normal. But I didn’t feel normal, something was off. It almost felt like a yoyo effect. I felt fine one minute and another back to the ‘weird’ feeling. It was quite scary. I couldn’t really pin point what exactly was wrong.
In April 2014, the pain behind my left eye came back and once again my vision became bright with a grey shadow. Once again I was told it was ON. This time I was referred for an MRI.
In August 2014 I experienced numbness of my tongue! It lasted for about a week. And a few weeks after I had numbness in my upper abdominal (the MS hug). I read about the hug and people report it as painful. I didn’t feel any pain just tightness, which resolved after 2 weeks. I also had big pain in my right ankle and it began swelling! It hurt to walk. It was not an injury because I haven’t been working out or haven’t done anything to strain it. It’s swollen until today.
In February 2015 I had my MRI done and the results showed about 5 lesions in the brain and I was sent to an MS Clinic at the hospital. After my first visit the doc didn’t give me a diagnosis just yet, just said it’s a possibility I have MS.
In May 2015, I once again experienced the weird yoyo feeling that sent me to the hospital in 2013. But it passed after 5 days. In June my vision became bright in both eyes at the SAME time. It really got me worried because my right hasn’t been affected. But after a few days my right eye was fine, left one lasted longer.
In August, I experienced numbness in different parts of the body at the SAME time. One morning I woke up with numbness in BOTH feet, the hug, and my two fingers. It all occurred on the same day and resolved around the same time. After reporting this to the MS doc, he gave me a diagnosis because he now had evidence of ‘multiple attacks’.
My question is, how is it possible that my FIRST symptom ever occurred in BOTH feet and it has continued. It’s never happened to one leg/foot, always both. If the nature of MS attacks is fairly random then how is this possible? I understand that after years and years of having the disease one might have enough lesions to cause symmetrical attacks. But the first symptom?
I also feel like I don’t fit MS symptoms but rather Lyme Disease. Technically, over the course of 5 years (tho it probably started earlier) I experienced 2 MS symptoms; the numbness and opic neuritis. I NEVER ever experience the MS fatigue, bladder problems, falling/stumbling, double/blurred vision(just bright), or cognitive issues.
I rather have other symptoms which the MS doc says aren’t MS related but probably due to anxiety... After doing some research on Lyme I read it can cause unexplained anxiety, panic attacks, feeling disoriented/not normal, which is what I’ve been experiencing. I have the tingling in both legs when I walk, some days my vision in left eye is bright some days it isn’t. It doesn’t seem consistent. For the first time this summer, I started feeling this weird shaky sensation in BOTH hands, traveling to my forearms. It was sometimes accompanied by ‘internal shaking’, as if my insides were vibrating. And if I sat down I felt like there was an earthquake. It’s not a tremor (that occurs in MS). My doc said it’s anxiety because MS ‘can’t cause a symptom in both hands at the same time’. So why didn’t he become alarmed that all my numbness attacks have been symmetrical?!
Apparently these symptoms do occur in Lyme, even unexplained anxiety/panic attacks. It could also explain the weird sensation that I feel sometimes, the not feeling ‘normal’, the yoyo. From time to time I feel pain in knees which comes and goes.
Thoughts anyone? Do you think I have the right diagnosis or should I get checked out for Lyme.
It all started in the summer of 2010 when one morning I woke up with numbness in BOTH of my feet (the next day it spread to my calves). It lasted about 2 weeks and completely went away. Of course I became alarmed, I went to the doctor and he said it's probably due to uncomfortable shoes I wear to the gym.
In the fall, I started feeling a cold/burning sensation in BOTH hands/fingers. At the time I used to type a lot of notes during lectures and the doc said it was 'probably' Carpal Tunnel. This symptom never came back.
The following year (2011) I experienced the same type of numbness in BOTH my legs (all the way from toes to buttocks). It occurred 2 times that year. I also started feeling tingling going from my toes all the way to my waist but ONLY when walking and of course in BOTH legs. This sensation would come and go, meaning I'd experience it one day and not the other but a few days after. Pretty random. Then the doc sent me for a test that measures your muscles/nerves' response to electrical impulses and the results showed nothing. I still experience this odd tingling til now when I walk and my MS specialist said it doesn't sound like MS (so until this day I don't know what causes this).
In January 2012 I started feeling ‘odd’. I had unexplained anxiety, heart palpitations and pain in my knees and thighs. I just didn’t feel like myself, I kinda felt weak and my heart was constantly pounding but all bloodwork and ECG came back normal. Eventually, after about 3 weeks it all went away.
In April 2012 I had pain behind my left eye and my vision seemed super bright but at the same time covered by a shadow (that's the best way to explain it). I was referred to an eye doctor at the hospital and he told me it’s ‘most likely’ Optic Neuritis. After about a month the grey shadow went away but I experienced the unusual brightness until June. At that point I was not referred for MRI and my doctor didn’t seem concerned. He said ON can just happen.
In the fall of 2012 I once again had numbness in BOTH feet for 2 weeks and a month later numbness in both legs. Having the numbness never gave me any difficulty walking nor did it make me fall/stumble/lose balance. It was just an uncomfortable sensation.
2013 was a good year, I don’t recall having any problems with numbness. However I ended up in the ER, because I felt ‘weird’. For a few days I didn’t feel ‘right’, it didn’t feel like anxiety though. Three days later I woke up with an ‘empty’ feeling in my stomach and I felt like I was gonna faint but I didn’t. Bloodwork and ECG came back normal. But I didn’t feel normal, something was off. It almost felt like a yoyo effect. I felt fine one minute and another back to the ‘weird’ feeling. It was quite scary. I couldn’t really pin point what exactly was wrong.
In April 2014, the pain behind my left eye came back and once again my vision became bright with a grey shadow. Once again I was told it was ON. This time I was referred for an MRI.
In August 2014 I experienced numbness of my tongue! It lasted for about a week. And a few weeks after I had numbness in my upper abdominal (the MS hug). I read about the hug and people report it as painful. I didn’t feel any pain just tightness, which resolved after 2 weeks. I also had big pain in my right ankle and it began swelling! It hurt to walk. It was not an injury because I haven’t been working out or haven’t done anything to strain it. It’s swollen until today.
In February 2015 I had my MRI done and the results showed about 5 lesions in the brain and I was sent to an MS Clinic at the hospital. After my first visit the doc didn’t give me a diagnosis just yet, just said it’s a possibility I have MS.
In May 2015, I once again experienced the weird yoyo feeling that sent me to the hospital in 2013. But it passed after 5 days. In June my vision became bright in both eyes at the SAME time. It really got me worried because my right hasn’t been affected. But after a few days my right eye was fine, left one lasted longer.
In August, I experienced numbness in different parts of the body at the SAME time. One morning I woke up with numbness in BOTH feet, the hug, and my two fingers. It all occurred on the same day and resolved around the same time. After reporting this to the MS doc, he gave me a diagnosis because he now had evidence of ‘multiple attacks’.
My question is, how is it possible that my FIRST symptom ever occurred in BOTH feet and it has continued. It’s never happened to one leg/foot, always both. If the nature of MS attacks is fairly random then how is this possible? I understand that after years and years of having the disease one might have enough lesions to cause symmetrical attacks. But the first symptom?
I also feel like I don’t fit MS symptoms but rather Lyme Disease. Technically, over the course of 5 years (tho it probably started earlier) I experienced 2 MS symptoms; the numbness and opic neuritis. I NEVER ever experience the MS fatigue, bladder problems, falling/stumbling, double/blurred vision(just bright), or cognitive issues.
I rather have other symptoms which the MS doc says aren’t MS related but probably due to anxiety... After doing some research on Lyme I read it can cause unexplained anxiety, panic attacks, feeling disoriented/not normal, which is what I’ve been experiencing. I have the tingling in both legs when I walk, some days my vision in left eye is bright some days it isn’t. It doesn’t seem consistent. For the first time this summer, I started feeling this weird shaky sensation in BOTH hands, traveling to my forearms. It was sometimes accompanied by ‘internal shaking’, as if my insides were vibrating. And if I sat down I felt like there was an earthquake. It’s not a tremor (that occurs in MS). My doc said it’s anxiety because MS ‘can’t cause a symptom in both hands at the same time’. So why didn’t he become alarmed that all my numbness attacks have been symmetrical?!
Apparently these symptoms do occur in Lyme, even unexplained anxiety/panic attacks. It could also explain the weird sensation that I feel sometimes, the not feeling ‘normal’, the yoyo. From time to time I feel pain in knees which comes and goes.
Thoughts anyone? Do you think I have the right diagnosis or should I get checked out for Lyme.
2 Comments
I would definitely get checked out for Lyme!
My son went 8 years misdiagnosed with multiple diagnosis and surgeries...nothing improved. One day someone suggested to get him tested for Lyme disease. I had never heard of it or ticks really...but went for the testing. We sent his blood to Armin Labs in Germany and sure enough, he came back positive.
I have since learned so much about our testing and non existent treatment here in Canada and it is abysmal!
Do not rely on Canadian testing and push for answers to your symptoms. MS diagnoses are handed out like candy...make them look outside the box.
My son went 8 years misdiagnosed with multiple diagnosis and surgeries...nothing improved. One day someone suggested to get him tested for Lyme disease. I had never heard of it or ticks really...but went for the testing. We sent his blood to Armin Labs in Germany and sure enough, he came back positive.
I have since learned so much about our testing and non existent treatment here in Canada and it is abysmal!
Do not rely on Canadian testing and push for answers to your symptoms. MS diagnoses are handed out like candy...make them look outside the box.
I would definitely get checked out for Lyme!
My son went 8 years misdiagnosed with multiple diagnosis and surgeries...nothing improved. One day someone suggested to get him tested for Lyme disease. I had never heard of it or ticks really...but went for the testing. We sent his blood to Armin Labs in Germany and sure enough, he came back positive.
I have since learned so much about our testing and non existent treatment here in Canada and it is abysmal!
Do not rely on Canadian testing and push for answers to your symptoms. MS diagnoses are handed out like candy...make them look outside the box.
My son went 8 years misdiagnosed with multiple diagnosis and surgeries...nothing improved. One day someone suggested to get him tested for Lyme disease. I had never heard of it or ticks really...but went for the testing. We sent his blood to Armin Labs in Germany and sure enough, he came back positive.
I have since learned so much about our testing and non existent treatment here in Canada and it is abysmal!
Do not rely on Canadian testing and push for answers to your symptoms. MS diagnoses are handed out like candy...make them look outside the box.
I have been worried for months that I may have the beginnings of MS (I have an MRI booked for tonight). But after reading through this entire forum I am not sure I do? First will say I've seen a neurologist and my nerve conduction is normal and he tested all my reflexes and said they are also completely normal.
My first symptoms started out exactly mirror image: both feet and toes felt a bit tingly and numb (but would come and go and seemed to be only while I was outside walking around). Then mirror image tingling feelings on the back of both calves that lasted a second or two and then has never come back.
This subsided and then a couple of months later both legs felt the exact same level of weakness but only when I was at home standing up or walking around, soon as I left for work they no longer felt weak.
My left foot gets this vibrating/buzzing feeling, and sometimes the right foot does and both my hands but the left foot is the worst. This vibrating/buzzing is very fleeting, will last between 1 and 5 seconds and then might not come back all day.
I get little muscle twitches ALL OVER my body (no place is off limits: face, eyelid, stomach, back, arms, fingers, hands, legs, toes). Twitches lasts for a second or two and then nothing for a day.
At night when resting I will wake up with internal tremor/shaking feeling. As I come to consciousness the tremor feeling subsides and I go back to sleep. This doesn't happen every night and seems worse if I've been drinking.
Not sure what to think? Other than worrying about possibly having MS I feel pretty good, no fatigue, weakness, no pain or discomfort except for the symptoms noted above.
If anyone has any insight or thoughts on my case I would be grateful! Thanks!
C
My first symptoms started out exactly mirror image: both feet and toes felt a bit tingly and numb (but would come and go and seemed to be only while I was outside walking around). Then mirror image tingling feelings on the back of both calves that lasted a second or two and then has never come back.
This subsided and then a couple of months later both legs felt the exact same level of weakness but only when I was at home standing up or walking around, soon as I left for work they no longer felt weak.
My left foot gets this vibrating/buzzing feeling, and sometimes the right foot does and both my hands but the left foot is the worst. This vibrating/buzzing is very fleeting, will last between 1 and 5 seconds and then might not come back all day.
I get little muscle twitches ALL OVER my body (no place is off limits: face, eyelid, stomach, back, arms, fingers, hands, legs, toes). Twitches lasts for a second or two and then nothing for a day.
At night when resting I will wake up with internal tremor/shaking feeling. As I come to consciousness the tremor feeling subsides and I go back to sleep. This doesn't happen every night and seems worse if I've been drinking.
Not sure what to think? Other than worrying about possibly having MS I feel pretty good, no fatigue, weakness, no pain or discomfort except for the symptoms noted above.
If anyone has any insight or thoughts on my case I would be grateful! Thanks!
C
2 Comments
Hi Cally33,
I read through your post and feel my issues align pretty well with yours, particularly the resting shakiness/tremors and muscle twitches throughout my body.
I noted that you were about the have an MRI at the time of your posting. Were you able to get more answers from your tests?
I hope you're doing well and thank you for your post.
-Amber
I read through your post and feel my issues align pretty well with yours, particularly the resting shakiness/tremors and muscle twitches throughout my body.
I noted that you were about the have an MRI at the time of your posting. Were you able to get more answers from your tests?
I hope you're doing well and thank you for your post.
-Amber
Hi Cally33,
I read through your post and feel my issues align pretty well with yours, particularly the resting shakiness/tremors and muscle twitches throughout my body.
I noted that you were about the have an MRI at the time of your posting. Were you able to get more answers from your tests?
I hope you're doing well and thank you for your post.
-Amber
I read through your post and feel my issues align pretty well with yours, particularly the resting shakiness/tremors and muscle twitches throughout my body.
I noted that you were about the have an MRI at the time of your posting. Were you able to get more answers from your tests?
I hope you're doing well and thank you for your post.
-Amber
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
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!
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
Thanks for your input,
Chezbug
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
skarey
"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.
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.
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
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
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.
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.
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.
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.
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.
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
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
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
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
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
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
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