Aa
MS misdiagnosed as Essential Tremor
I am a 43 year old female, diagnosed with ET almost 2 years ago. Taking 20 mg of propranolol daily since then up until 2 weeks ago when they upped my dosage to 80 mg. 9 months ago I started having vertigo with some nystagmus. CT was negative, vestibular testing negative and eply did not help. Nystagmus is pretty much gone but still feel very off balance and dizzy and adding migraines to the list of complaints. I have noticed several times walking that my right toe catches on the floor and I stumble which in turns triggers the dizziness to get worse and have to sit down. I have fallen out of bed twice and fallen a few times doing various things mostly involving bending over and picking things up. I never feel steady, I go to work and I come home, I very rarely go to the store (no point since I cant drive). But the few times I have, I have had to go sit down, I can only go up and down a few aisles. I also have an issue with other people standing on things (ladders, bleachers going up and down steps) where I think they are moving/falling. I am having an MRI next week to rule out MS.After upping my dosage my tremors are now worse and I have developed a twitching in my upper inner arms. Spoke with my neuro said to drop the dosage back down and stay hydrated. I asked my neuro why did the tremors get worse instead of better, said I dont know, I guess you just dont process meds like other people. Tried 4 different migraine meds and allergic to all 4. Could it be possible that its a misdiagnosis of ET? I also have hypothyroidism and levels are normal as of a couple of months ago. I am suppose to go to a balance specialist at Emory in Atlanta in July. Just trying to figure out if I should wait for this July appt or try another local neuro before I waste my time and money going to Atlanta and still have the possibility of no answers.
I have had tremors for at least 16 years due to the thyroid issues, and after normal labs almost 2 years ago and the tremor got worse is when I was dx with ET. the 20 mg dosage I was started on didnt completely stop it but made it tolerable up until a month or so ago when the tremors got worse (thyroid labs still normal) so talk to the dr about it and upped my dosage, now its where my food shakes off my fork.
So I can't really say which the tremors are really associated with, probably a combination of both. As with my dizziness I always feel off balance, fast movements make it worse, bending, driving etc. One odd thing when someone is standing next to me, I think they are moving when they aren't. When I was doing all the eply and balance strategies and I would stand in certain positions my husband would stand next to me to make sure I wouldn't fall and I would smack him thinking he was wobbling and it was me. I kinda feel because of the tremors since I never stop moving that that is why I have the dizziness/off balance but I don't know. I am at the point where we are grasping at straws. I do notice some trembling in my voice, certain words especially, I work in a call center so I find my annoying word "calling" As in "thank you for calling...." that I have to say 5 million times a day.
So I can't really say which the tremors are really associated with, probably a combination of both. As with my dizziness I always feel off balance, fast movements make it worse, bending, driving etc. One odd thing when someone is standing next to me, I think they are moving when they aren't. When I was doing all the eply and balance strategies and I would stand in certain positions my husband would stand next to me to make sure I wouldn't fall and I would smack him thinking he was wobbling and it was me. I kinda feel because of the tremors since I never stop moving that that is why I have the dizziness/off balance but I don't know. I am at the point where we are grasping at straws. I do notice some trembling in my voice, certain words especially, I work in a call center so I find my annoying word "calling" As in "thank you for calling...." that I have to say 5 million times a day.
COMMUNITY LEADER
Hi and welcome,
I have to agree with ess about drawing conclusions at this point, i also noticed that you mentioned in one of your posts that you were told it wasn't 'true vertigo' and thought the wise words from our beloved Quix back in 2008 might be of some help in understanding this issue...
"What one person describes may be way different from what another person describes with the same problem.
First off people describe all of those things generically as dizzy. Dizzy is a totally non-specific word used to mean all manner of sensations that make you feel as though you might lose your balance and fall. Dizzy is a sensation felt in your head.
There are two main categories of dizziness.
1) The first is not a problem of the balance center of the brain, but rather of the cardiovascular system and the blood pressure. The terms doctors might use for this with patients is faintness or lightheadedness or pre-syncope. The blood pressure in the person has dropped and the person feels as though they might lose consciousness and fall to the ground in a faint. The head may be tingly, the vision may dim or "gray out." Often the person can no longer hear well the noises around them. Them heartbeat will speed up and often they break out in a sweat. Their legs feel weak as though they will buckle. If they don't sit down and put their heads down, the ultimate result is usually fainting or syncope (sin'-coh-pee) Many people have experienced fainting - this kind of dizziness is the physical feelings associated with fainting.
There is an expression that some of you might understand called the "head rush." This is when you stand up too quickly and the world gets fuzzy, your heart beats hard and you feel as though you might faint. This is lightheadedness or faintness. It can also happen when you've stood too long, possibly in the heat, and the feeling washes over you and you feel like you can no longer stand and might lose consciousness. The brain doesn't seem to be working well and the thinking functions are often slowed.
People all call this feeling dizzy - because they don't feel confident in their ability to stay upright and the world seems to swim about them.
2) The second kind of dizziness is the kind caused by problems with the balance organs of the body, whether they be in the inner ear, the brainstem or the brain. These are not associated with loss of consciousness (though we might certainly wish they would be!). We lose our certainty of where we are in space. Either we, or the world around us, seems to shift or whirl or spin. There is a sensation that there is movement that shouldn't be there.
A common feeling that many people can relate to is the sensation we may have after being on a boat for a long while. Then for a time after we get to firm land we may occasionally still feel as though we are on the rocking boat - especially when we rest. We will still feel the rocking, yet we know that we are on steady land. The sensation of movement is false. This is vertigo.
Some doctors state that you can tell if something is true vertigo by whether a person feels that they themselves are moving or whether the world is moving around them. This is a false definition. People will describe true vertigo both ways. They will also descibe this sensation as being "dizzy."
Vertigo has many different sensations that are possible with it. They may have persistent or intermittent sense of unease in where they are with regard to the ground. It may seem to shift around under their feet and cause them to need to grasp for the walls or furniture to stay upright. Vertigo does not feel like you will lose consciousness, though you may wish you would. You are totally aware of what is happening.
In the type of vertigo called BPPV (Benign Paroxysmal Positional Vertigo) a person may be fine and feel very steady in space until their head moves into a certain position, say - tilted back looking upward. In the critical position they may suddenly feel like the world whirls madly around them or like they are falling violently into space. If they are upright this may cause a sudden violent fall or lurch into something closeby. The sensation is fairly brief (10 seconds or so) but they may feel usteady and nauseated for hours afterward. They do not lose concsiousness. BPPV is a mechanical problem in the inner ear and is very treatable (for those of you that recognize this description).
If the irritation to the inner ear of brainstem is more sustained a person may have attacks of hours to many days of feeling like they or the world is constantly moving. This is often associated with severe nausea. Basic activities of daily life can be difficult or impossible. It may be hard to walk straight or to judge distances for reaching, or impossible to drive. Examples of this type of vertigo might be that seen in MS or Meniere's Disease.
During true vertigo a person may be seen to have jerking movements of their eyes called "nystagmus." In BPPV the nystagmus happens just during those several seconds of several whirling. In more sustained vertigo the nystagmus may be present all, or a great deal, of the time.
People with damage to the vestibular (steadiness in space and balance) may be very sensitive to motion, such as riding in cars, or sudden turning of their heads. Such things may or may not bring on severe bouts of whirling, but may make them feel les secure about their ability to remain upsight and insecure about where "down" is, for example. People with vertigo are often sensitive to barometric pressure and feel worse with the coming of storms (ie. falling barometric pressure). Their conditon may be worsened during plane flights and going over moutain passes. "
http://www.medhelp.org/posts/Multiple-Sclerosis/Vertigo-vs-Dizziness/show/673207
"I am suppose to go to a balance specialist at Emory in Atlanta in July. Just trying to figure out if I should wait for this July appt or try another local neuro before I waste my time and money going to Atlanta and still have the possibility of no answers."
I actually think it's in your best interest, to get a second opinion from a balance specialist, the specific causation of your balance issues, will make all the difference to your understanding on what is happening and the types of different treatment options more suitable to your specific needs, so i honestly think you should go to this july appointment.
Q: Could it be possible that its a misdiagnosis of ET?
A: You don't actually really say anything about the tremor, its pattern etc that you experience, so it's difficult to have an opinion on if it's possibly 'you' were misdiagnosed with Essential Tremor or not......but different types of tremors are commonly misdiagnosed as ET, so theoretically it is actually possible to be misdiagnosed, so may be?
This http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3674100/ is a very good medical article about Essential Tremors and well worth reading to get an idea on if what you experience fits etc.
Cheers.......JJ
I have to agree with ess about drawing conclusions at this point, i also noticed that you mentioned in one of your posts that you were told it wasn't 'true vertigo' and thought the wise words from our beloved Quix back in 2008 might be of some help in understanding this issue...
"What one person describes may be way different from what another person describes with the same problem.
First off people describe all of those things generically as dizzy. Dizzy is a totally non-specific word used to mean all manner of sensations that make you feel as though you might lose your balance and fall. Dizzy is a sensation felt in your head.
There are two main categories of dizziness.
1) The first is not a problem of the balance center of the brain, but rather of the cardiovascular system and the blood pressure. The terms doctors might use for this with patients is faintness or lightheadedness or pre-syncope. The blood pressure in the person has dropped and the person feels as though they might lose consciousness and fall to the ground in a faint. The head may be tingly, the vision may dim or "gray out." Often the person can no longer hear well the noises around them. Them heartbeat will speed up and often they break out in a sweat. Their legs feel weak as though they will buckle. If they don't sit down and put their heads down, the ultimate result is usually fainting or syncope (sin'-coh-pee) Many people have experienced fainting - this kind of dizziness is the physical feelings associated with fainting.
There is an expression that some of you might understand called the "head rush." This is when you stand up too quickly and the world gets fuzzy, your heart beats hard and you feel as though you might faint. This is lightheadedness or faintness. It can also happen when you've stood too long, possibly in the heat, and the feeling washes over you and you feel like you can no longer stand and might lose consciousness. The brain doesn't seem to be working well and the thinking functions are often slowed.
People all call this feeling dizzy - because they don't feel confident in their ability to stay upright and the world seems to swim about them.
2) The second kind of dizziness is the kind caused by problems with the balance organs of the body, whether they be in the inner ear, the brainstem or the brain. These are not associated with loss of consciousness (though we might certainly wish they would be!). We lose our certainty of where we are in space. Either we, or the world around us, seems to shift or whirl or spin. There is a sensation that there is movement that shouldn't be there.
A common feeling that many people can relate to is the sensation we may have after being on a boat for a long while. Then for a time after we get to firm land we may occasionally still feel as though we are on the rocking boat - especially when we rest. We will still feel the rocking, yet we know that we are on steady land. The sensation of movement is false. This is vertigo.
Some doctors state that you can tell if something is true vertigo by whether a person feels that they themselves are moving or whether the world is moving around them. This is a false definition. People will describe true vertigo both ways. They will also descibe this sensation as being "dizzy."
Vertigo has many different sensations that are possible with it. They may have persistent or intermittent sense of unease in where they are with regard to the ground. It may seem to shift around under their feet and cause them to need to grasp for the walls or furniture to stay upright. Vertigo does not feel like you will lose consciousness, though you may wish you would. You are totally aware of what is happening.
In the type of vertigo called BPPV (Benign Paroxysmal Positional Vertigo) a person may be fine and feel very steady in space until their head moves into a certain position, say - tilted back looking upward. In the critical position they may suddenly feel like the world whirls madly around them or like they are falling violently into space. If they are upright this may cause a sudden violent fall or lurch into something closeby. The sensation is fairly brief (10 seconds or so) but they may feel usteady and nauseated for hours afterward. They do not lose concsiousness. BPPV is a mechanical problem in the inner ear and is very treatable (for those of you that recognize this description).
If the irritation to the inner ear of brainstem is more sustained a person may have attacks of hours to many days of feeling like they or the world is constantly moving. This is often associated with severe nausea. Basic activities of daily life can be difficult or impossible. It may be hard to walk straight or to judge distances for reaching, or impossible to drive. Examples of this type of vertigo might be that seen in MS or Meniere's Disease.
During true vertigo a person may be seen to have jerking movements of their eyes called "nystagmus." In BPPV the nystagmus happens just during those several seconds of several whirling. In more sustained vertigo the nystagmus may be present all, or a great deal, of the time.
People with damage to the vestibular (steadiness in space and balance) may be very sensitive to motion, such as riding in cars, or sudden turning of their heads. Such things may or may not bring on severe bouts of whirling, but may make them feel les secure about their ability to remain upsight and insecure about where "down" is, for example. People with vertigo are often sensitive to barometric pressure and feel worse with the coming of storms (ie. falling barometric pressure). Their conditon may be worsened during plane flights and going over moutain passes. "
http://www.medhelp.org/posts/Multiple-Sclerosis/Vertigo-vs-Dizziness/show/673207
"I am suppose to go to a balance specialist at Emory in Atlanta in July. Just trying to figure out if I should wait for this July appt or try another local neuro before I waste my time and money going to Atlanta and still have the possibility of no answers."
I actually think it's in your best interest, to get a second opinion from a balance specialist, the specific causation of your balance issues, will make all the difference to your understanding on what is happening and the types of different treatment options more suitable to your specific needs, so i honestly think you should go to this july appointment.
Q: Could it be possible that its a misdiagnosis of ET?
A: You don't actually really say anything about the tremor, its pattern etc that you experience, so it's difficult to have an opinion on if it's possibly 'you' were misdiagnosed with Essential Tremor or not......but different types of tremors are commonly misdiagnosed as ET, so theoretically it is actually possible to be misdiagnosed, so may be?
This http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3674100/ is a very good medical article about Essential Tremors and well worth reading to get an idea on if what you experience fits etc.
Cheers.......JJ
I have had essential tremor since I w,as in college, which was oh, about a million years ago. If this was misdiagnosed and is really MS, then MS took most of a lifetime to show up otherwise. Some years back but after my MS diagnosis I was given a prescription for propanolol, I think 20 mg, but I didn't take it often. I had reached the point where I didn't really care what other people thought, so if they decided I was a lush, too bad. I would never take 80 mg, though, because propanolol slows the heartbeat, and that can be a bad thing indeed. Besides, I was on enough meds as it was, and didn't want to take something that for me wasn't really necessary. I have also been hypothyroid since my mid thirties, and have taken Synthroid since then.
So from these points of view you and I are similar. Also, I have had 5 or 6 long bouts of an atypical vertigo, with very minor nystagmus. I used to suffer from migraines (they gin my family) but haven't had a single migraine since menopause, which maybe not so coincidentally was about the time I split from my increasingly impossible husband :-)
In my case I strongly doubt the tremors have to do with anything, or the migraines either, or the thyroid stuff. They just are. Other stuff, and a lot more I haven't described, is right on the money for MS, which I definitely have.
My point in saying all this is that in my estimation you are drawing conclusions way too soon. You might well have several standalone disorders. You might have balance issues not related to MS. And you might have MS. So if I were you I'd go to Atlanta and see the big gun there. Have that problem on the table, and maybe it will be knocked off, maybe not. But I'd want to know one way or the other.'
Don't draw conclusions at the point. You haven't even had an MRI.
ess
So from these points of view you and I are similar. Also, I have had 5 or 6 long bouts of an atypical vertigo, with very minor nystagmus. I used to suffer from migraines (they gin my family) but haven't had a single migraine since menopause, which maybe not so coincidentally was about the time I split from my increasingly impossible husband :-)
In my case I strongly doubt the tremors have to do with anything, or the migraines either, or the thyroid stuff. They just are. Other stuff, and a lot more I haven't described, is right on the money for MS, which I definitely have.
My point in saying all this is that in my estimation you are drawing conclusions way too soon. You might well have several standalone disorders. You might have balance issues not related to MS. And you might have MS. So if I were you I'd go to Atlanta and see the big gun there. Have that problem on the table, and maybe it will be knocked off, maybe not. But I'd want to know one way or the other.'
Don't draw conclusions at the point. You haven't even had an MRI.
ess
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
