Aa
Clinically Isolated Syndrome
Hi, all. I'm obviously a newbie 'round these parts but I've been lurking a little and I think I'll like it.
About 8 years ago I had some balance issues, some major face pain that lasted for eons, and wobbly eyes and floaters. Had an MRI that was apparently clear.
In the last two years I had an occasion where my vision slowly closed in on the right eye and that lasted for a few hours. I've had major balance issues, some serious congnitive things that affected me at work, numbness, problems with heat, and some major bouts of face pain and exhaustion. I have a tremor constantly in both hands, worse in my left, that some days shakes the bed and I can feel it clear into my chest on bad days. I get a wicked itch that lasts for days and weeks. I had an MRI that showed two spots in the periventricular white matter that "could not be ruled out as MS."
Saw a specialist in Chicago who basically told me I had CIS exacerbated by stress, of which there was tons at the time, and no lie, "go on with your life and put this out of your head." She told me that the two spots on my MRI could be shadows. She had no explanation for the shaking or the large numb patch on my left leg.
Anyway, all that to say I am without a Dx. But I am an Orthotist (the person who makes the braces many of you wear) and I have a large MS practice. Many of those patients have asked me if I have MS simply because of the way I walk, the shaking, and the leg thing. I see this stuff every day, and dang it, I know my body.
Im at a loss. The shaking continues, as do the buzzing and bee sting feelings in my hands arms and legs, but mostly I am okay right now. I moved closer to work to diminish the stress, and that too seems to have helped.
Im considering one more visit with an MS specialist, and Im thinking the MS clinic in Merrilville Indiana, home of the amazing Dr Prasad. Im thinking I will ask for, finally, an MRI of my spine, as no one's suggested that yet.
Any other suggestions you lot might have will be appreciated. Im at my wit's end and I know early intervention is where it's at. They won't say MS, but they won't say anything else either. This shaking? The face pain? The exhaustion? Im sick of it, yo.
Basically, hi. Glad y'all are here.
About 8 years ago I had some balance issues, some major face pain that lasted for eons, and wobbly eyes and floaters. Had an MRI that was apparently clear.
In the last two years I had an occasion where my vision slowly closed in on the right eye and that lasted for a few hours. I've had major balance issues, some serious congnitive things that affected me at work, numbness, problems with heat, and some major bouts of face pain and exhaustion. I have a tremor constantly in both hands, worse in my left, that some days shakes the bed and I can feel it clear into my chest on bad days. I get a wicked itch that lasts for days and weeks. I had an MRI that showed two spots in the periventricular white matter that "could not be ruled out as MS."
Saw a specialist in Chicago who basically told me I had CIS exacerbated by stress, of which there was tons at the time, and no lie, "go on with your life and put this out of your head." She told me that the two spots on my MRI could be shadows. She had no explanation for the shaking or the large numb patch on my left leg.
Anyway, all that to say I am without a Dx. But I am an Orthotist (the person who makes the braces many of you wear) and I have a large MS practice. Many of those patients have asked me if I have MS simply because of the way I walk, the shaking, and the leg thing. I see this stuff every day, and dang it, I know my body.
Im at a loss. The shaking continues, as do the buzzing and bee sting feelings in my hands arms and legs, but mostly I am okay right now. I moved closer to work to diminish the stress, and that too seems to have helped.
Im considering one more visit with an MS specialist, and Im thinking the MS clinic in Merrilville Indiana, home of the amazing Dr Prasad. Im thinking I will ask for, finally, an MRI of my spine, as no one's suggested that yet.
Any other suggestions you lot might have will be appreciated. Im at my wit's end and I know early intervention is where it's at. They won't say MS, but they won't say anything else either. This shaking? The face pain? The exhaustion? Im sick of it, yo.
Basically, hi. Glad y'all are here.
I did look up Dr. Prasad.
If you can go to her, on the face of things, she sounds like she is a compassionate, caring person. Not dismissive! That can only benefit you.
Crying is okay; I tell my kids, that's what God made tear ducts for, so use 'em!!
Suzanne
If you can go to her, on the face of things, she sounds like she is a compassionate, caring person. Not dismissive! That can only benefit you.
Crying is okay; I tell my kids, that's what God made tear ducts for, so use 'em!!
Suzanne
Welcome honey.
I reckon by the sounds of it you are way past early intervention. What you need is intervention - and a little understanding.
No you shouldn't wait until the symptoms are big timing it again. You need to see the best MS doctor you can (and get a recommendation from your clients - they are at the coal face).....
Hot weather can make things worse.
Summer is hitting in my part of the world and I am beginning to have more problems with fatigue, even without overt new symptoms.... My office aircon ain't working so well and don't I know it.
Welcome welcome, again welcome.
Sally
I reckon by the sounds of it you are way past early intervention. What you need is intervention - and a little understanding.
No you shouldn't wait until the symptoms are big timing it again. You need to see the best MS doctor you can (and get a recommendation from your clients - they are at the coal face).....
Hot weather can make things worse.
Summer is hitting in my part of the world and I am beginning to have more problems with fatigue, even without overt new symptoms.... My office aircon ain't working so well and don't I know it.
Welcome welcome, again welcome.
Sally
One thing more. I kind of feel like the crazy lady who takes her car to the mechanic for a pinging noise, except the pinging noise won't show up at the mechanic's.
Should I wait until the symptoms are big-obvious again?
Should I wait until the symptoms are big-obvious again?
Holy ****! I don't know what to say! But she was from Northwestern, and I really.... I don't know. I'd researched and my PCP had to make an appointment to talk with her before she'd see me. I trusted her!
I almost quit my job, for the love of pete! She told me to get on with my life and to PUT IT OUT OF MY HEAD!
And so now, with your reaction and... cripe, someone actually believing me for once about all this... well, maybe I'll cry. I just don't know. I mean, I had to walk away from the pc several times during your reply. I'M NOT CRAZY!
But you've asked just over eleventy billion questions and I want to answer every one. But I really think I need that cry. And a cup of tea. And maybe a punching bag.
The quick answer is: big stuff 8 years ago. Little stuff, the shaking and the face and the balance through the years that I just got used to and then the bout of 2 years ago that lasted for 6 months or so. When last summer didn't kill me, I guess I just thought I was making it all up or blowing it out of proportion. Do some of you lot not have trouble every hot day?
Thank you. Even if all I get is this one person actually believing me... it helped. I've just stopped talking about it, you know? Who wants to hear the hypochondriac whine?
I'll dig out the reports and give the answers. And seriously. Thank you.
~T
I almost quit my job, for the love of pete! She told me to get on with my life and to PUT IT OUT OF MY HEAD!
And so now, with your reaction and... cripe, someone actually believing me for once about all this... well, maybe I'll cry. I just don't know. I mean, I had to walk away from the pc several times during your reply. I'M NOT CRAZY!
But you've asked just over eleventy billion questions and I want to answer every one. But I really think I need that cry. And a cup of tea. And maybe a punching bag.
The quick answer is: big stuff 8 years ago. Little stuff, the shaking and the face and the balance through the years that I just got used to and then the bout of 2 years ago that lasted for 6 months or so. When last summer didn't kill me, I guess I just thought I was making it all up or blowing it out of proportion. Do some of you lot not have trouble every hot day?
Thank you. Even if all I get is this one person actually believing me... it helped. I've just stopped talking about it, you know? Who wants to hear the hypochondriac whine?
I'll dig out the reports and give the answers. And seriously. Thank you.
~T
Hi! Welcome to our place. First off I want you to go and read the Welcome message on the Health Pages. I wrote it especially for people like you who do not have a diagnosis. So many MS forums do not want to speak to people until they have a confirmed Dx. But, the people hanging around in Diagnostic Limbo need far more support than someone who knows what the story is! You have definite serious concerns about having MS, AND you have managed to see a dumb, dododoc of a neuro who was dismissive, defective, dense, and a total dufus. Not to show my bias (which I assure you is totally justified), but this specialist in Chicago didn't happen to be at the University of Chicago did she?
I digress.
Eight years ago you had symptoms that historically sound like Trigeminal Neuralgia, possible nystagmus (wobbly eyes), and balance issues. This combination of symptoms is screamingly suggestive of MS and of lesions in the brainstem and cerebellum. The MRI was "clear." Is there anyway you could get that report? At that time, you needed at really thorough neuro exam. What explanation was given you for those symptoms?
What was the facial pain like? Was it lancinating, lightening-like jabbing pains, constant pain or a combination? Was it on one side or both? Did you receive any treatment for it?
Were the next 8 years really without problems or just without major ones?
Now (for the last 2 years) are the symptoms episodic? Do you have problems that you have for a while and then they leave, only to come back? Where is the numbness? What about your balance is defective? Any of the problems fairly persisitent?
So you saw this idiot of a neuro who apparently ordered the MRI? what kind of neuro exam did you have? If it was thorough it covered you head to toe and involved a total work out of sensory testing, muscle strength, reflexes, balance and coordination, gait anaysis, and cranial nerve testing. As an example, each time my neuro sees me he tests 18 muscle groups on each side. This is just his follow up, interval testing.
Do you have the report on the 2 white matter lesions? Do you know if they were pinpoint or large enough to be measured? Lesions in the presence of significant symptoms being dismissed as probably shadows? Maybe in the old days, but MRIs of the brain are now good enough that most "lesions" can't be written off as "shadows." What nonsnense!
Where are your tremors? Do they occur just at rest or are they accentuated wioth movement? Tremors are very common with MS and are usually action or movement related.
What are your reflexes like? Do you have any clonus? What affects your gait? Are you ataxic? What is the face pain like now? one or both sides?
As you can see we'd like to hear a lot more detail about what you are going through. Being an Orthotist I would think you have a good idea who the better neuro's are in your area. You definitely need a new one and a good one.
As for the concept that you have a CIS - If we are discussing possible CIS then you are waaaayyyyyyy beyond that designation! A CIS is a single attack of symptoms suggestive of a demyelinating process. You had that 8 years ago. You have since had at least a second and, from the term "bouts" that you used, probably many more than that. Cognitive difficulties, facial pain, tremors (which sound major), heat intolerance (what happens?), balance, gait disturbance, MRI lesions. This is far more than a CIS.
Just for the sake of argument, if this "nurrow" thought you had a CIS, she was telling you that you fit into the definition of early MS. Current recommendations for CIS are for beginning treatment with MS meds (in most of the US outside the Mayo Clinic). What an idiot.
I'm all for your seeing a highly reputable MS Clinic and specialist, but if there is going to be lag there, then get another opinion locally. When was the MRI done? Was it done with contrast? Yes, you definitely need a spine MRI as you have very suggestive signs of brainstem problems. You also need the work up to rule out other things that can cause symptoms like yours and possibly an LP.
Well, I'm frustrated. Yet another example of a neurologist who can't think past her own front end! You sound fed up, but you have painted the picture of a person with MS. Though I can't diagnose anything online I would encourage you to not give up after the disheartening experience of finding a defective neurologist. Arrrrgh! Some of us here have been through several of these idiots to get the answers we need. Your local family practitioner could probably make the Dx of MS here!
Well, I am particularly inarticulate today. I apologize. I am the local MD here - unofficial and not a neurologist. I hope we can help you move toward a better approach to your suffering than "Get on with your life." There is nothing that is more insulting than the implication that you are making too big a deal of the fact that your body is no longer functioning properly.
I hope you tell us more of your story. Meanwhile, make an appointment with the clinic in Merrilville. Welcome. I promise to make more sense next time. Yes, we will have major suggestions for you.
Quix, MD
I digress.
Eight years ago you had symptoms that historically sound like Trigeminal Neuralgia, possible nystagmus (wobbly eyes), and balance issues. This combination of symptoms is screamingly suggestive of MS and of lesions in the brainstem and cerebellum. The MRI was "clear." Is there anyway you could get that report? At that time, you needed at really thorough neuro exam. What explanation was given you for those symptoms?
What was the facial pain like? Was it lancinating, lightening-like jabbing pains, constant pain or a combination? Was it on one side or both? Did you receive any treatment for it?
Were the next 8 years really without problems or just without major ones?
Now (for the last 2 years) are the symptoms episodic? Do you have problems that you have for a while and then they leave, only to come back? Where is the numbness? What about your balance is defective? Any of the problems fairly persisitent?
So you saw this idiot of a neuro who apparently ordered the MRI? what kind of neuro exam did you have? If it was thorough it covered you head to toe and involved a total work out of sensory testing, muscle strength, reflexes, balance and coordination, gait anaysis, and cranial nerve testing. As an example, each time my neuro sees me he tests 18 muscle groups on each side. This is just his follow up, interval testing.
Do you have the report on the 2 white matter lesions? Do you know if they were pinpoint or large enough to be measured? Lesions in the presence of significant symptoms being dismissed as probably shadows? Maybe in the old days, but MRIs of the brain are now good enough that most "lesions" can't be written off as "shadows." What nonsnense!
Where are your tremors? Do they occur just at rest or are they accentuated wioth movement? Tremors are very common with MS and are usually action or movement related.
What are your reflexes like? Do you have any clonus? What affects your gait? Are you ataxic? What is the face pain like now? one or both sides?
As you can see we'd like to hear a lot more detail about what you are going through. Being an Orthotist I would think you have a good idea who the better neuro's are in your area. You definitely need a new one and a good one.
As for the concept that you have a CIS - If we are discussing possible CIS then you are waaaayyyyyyy beyond that designation! A CIS is a single attack of symptoms suggestive of a demyelinating process. You had that 8 years ago. You have since had at least a second and, from the term "bouts" that you used, probably many more than that. Cognitive difficulties, facial pain, tremors (which sound major), heat intolerance (what happens?), balance, gait disturbance, MRI lesions. This is far more than a CIS.
Just for the sake of argument, if this "nurrow" thought you had a CIS, she was telling you that you fit into the definition of early MS. Current recommendations for CIS are for beginning treatment with MS meds (in most of the US outside the Mayo Clinic). What an idiot.
I'm all for your seeing a highly reputable MS Clinic and specialist, but if there is going to be lag there, then get another opinion locally. When was the MRI done? Was it done with contrast? Yes, you definitely need a spine MRI as you have very suggestive signs of brainstem problems. You also need the work up to rule out other things that can cause symptoms like yours and possibly an LP.
Well, I'm frustrated. Yet another example of a neurologist who can't think past her own front end! You sound fed up, but you have painted the picture of a person with MS. Though I can't diagnose anything online I would encourage you to not give up after the disheartening experience of finding a defective neurologist. Arrrrgh! Some of us here have been through several of these idiots to get the answers we need. Your local family practitioner could probably make the Dx of MS here!
Well, I am particularly inarticulate today. I apologize. I am the local MD here - unofficial and not a neurologist. I hope we can help you move toward a better approach to your suffering than "Get on with your life." There is nothing that is more insulting than the implication that you are making too big a deal of the fact that your body is no longer functioning properly.
I hope you tell us more of your story. Meanwhile, make an appointment with the clinic in Merrilville. Welcome. I promise to make more sense next time. Yes, we will have major suggestions for you.
Quix, MD
Today is about the usual. The shaking is a constant and I'm tired. But all in all, not bad. My main thing is that I am dreading the heat to come because the pseudo-secretarial types in my office don't move around much and so they get cold really easy, thus keeping it very warm in there. If I could get some kind of Dx I feel like I'd have some power (via the ADA) over that frickin' AC unit and my legs wouldn't tingle all day! (/rant. sorry.)
So, your question.
First come the usual disclaimers: I am not a Doctor and I cannot, here or in my practice, "prescribe" bracing.
So I'd have a few questions for you. Are you currently in physical therapy? Are you doing stretching to relieve the contracture? Is it neurological or muscular? High or low tone?
There are a few, limited, choices in regards to the hip. But my main suggestion would be to talk with your physical therapist about whether or not bracing would help. If you are working to regain range of motion, then there are some options to help maintain the motion. None of the hip braces are a pleasure to wear, though. And you want to do the most minimal bracing so as to not lose what strength you have.
Talk to your PT and your Dr. Sorry I couldn't be more help. You went tough on me for the first question!
So, your question.
First come the usual disclaimers: I am not a Doctor and I cannot, here or in my practice, "prescribe" bracing.
So I'd have a few questions for you. Are you currently in physical therapy? Are you doing stretching to relieve the contracture? Is it neurological or muscular? High or low tone?
There are a few, limited, choices in regards to the hip. But my main suggestion would be to talk with your physical therapist about whether or not bracing would help. If you are working to regain range of motion, then there are some options to help maintain the motion. None of the hip braces are a pleasure to wear, though. And you want to do the most minimal bracing so as to not lose what strength you have.
Talk to your PT and your Dr. Sorry I couldn't be more help. You went tough on me for the first question!
Hi there, how are you doing today? Here is my first question about braces, I have a miserable contracture of the hip and I hear bracing can help with it. What is your take on this matter and what kind of brace do you make for a hip?
Your Spazie Friend,
Ada
Your Spazie Friend,
Ada
Nomy,
Hi and welcome. Don't sweat the no dx thing. Lots of us here don't have one.
But we share 1 thing in common with the dx people, we have weird symptoms, and they affect our lives and how we live.
People here are a fantastic resource. Sometimes, when something's off, it's nice to just post and ask if others have had it. It helps to 1) know you're not alone, or 2) get an idea if this is something that's likely unrelated and should be brough to the attention of your PCP.
Make yourself at home here, these are fantastic people (I have to say, from experience, they are better than a lot of the other boards, but that's just my opinion), and they will do whatever they can to help.
Christine
(un-dx too)
Hi and welcome. Don't sweat the no dx thing. Lots of us here don't have one.
But we share 1 thing in common with the dx people, we have weird symptoms, and they affect our lives and how we live.
People here are a fantastic resource. Sometimes, when something's off, it's nice to just post and ask if others have had it. It helps to 1) know you're not alone, or 2) get an idea if this is something that's likely unrelated and should be brough to the attention of your PCP.
Make yourself at home here, these are fantastic people (I have to say, from experience, they are better than a lot of the other boards, but that's just my opinion), and they will do whatever they can to help.
Christine
(un-dx too)
Yep, I'm tired.
Dr. Prasad is an amazing doctor in these parts who is the main reason that hospital in Merrilville got certified as an MS Clinic. She's googleable, I think. (How fun a word is that?!)
As for the questions, I assume you mean about bracing and stuff. Bring it. If I can help in any way, I absolutely will.
I definitely like it around here and I'll be stopping in often. I feel a little awkward what with the no Dx bit... but I'll jump in.
Thanks for the welcome!
Dr. Prasad is an amazing doctor in these parts who is the main reason that hospital in Merrilville got certified as an MS Clinic. She's googleable, I think. (How fun a word is that?!)
As for the questions, I assume you mean about bracing and stuff. Bring it. If I can help in any way, I absolutely will.
I definitely like it around here and I'll be stopping in often. I feel a little awkward what with the no Dx bit... but I'll jump in.
Thanks for the welcome!
Hello and Welcome! This is the best Forum Family ever and we are glad that you are here.
We are lucky to have you, believe me you will be getting a lot of questions from us, so beware!
Hon, if you are not comfortable with what the neuro said get a second opinion, it is a very frustrating process and you have had these symptoms for a long time. Have you had an opthamologist check your eyes? Your eyes are so important and I think you should get them checked out.
I would definately get an MRI of your spine, ask for a Tesla 3-weighted machine. The pix are wonderful and make sure they do it with contrast. There are a lot of us in Limbo and we call the MS forum home. There are so many mimics of MS and it is a long and hard process to rule out other things.
Well, we are glad that you are here....
Spastic Ada
We are lucky to have you, believe me you will be getting a lot of questions from us, so beware!
Hon, if you are not comfortable with what the neuro said get a second opinion, it is a very frustrating process and you have had these symptoms for a long time. Have you had an opthamologist check your eyes? Your eyes are so important and I think you should get them checked out.
I would definately get an MRI of your spine, ask for a Tesla 3-weighted machine. The pix are wonderful and make sure they do it with contrast. There are a lot of us in Limbo and we call the MS forum home. There are so many mimics of MS and it is a long and hard process to rule out other things.
Well, we are glad that you are here....
Spastic Ada
hi,and welcome ...if you have been lurking around here you have to know that these are the greatest people around...and im sure they will be answering the best of there ability...again welcome and take care.....deb
Hi! If you have access to an actual true blue MS clinic, take advantage of it!
Who is Dr. Prasad?
You sound exhausted; hope you can find some peace of mind here!
Suzanne
Who is Dr. Prasad?
You sound exhausted; hope you can find some peace of mind here!
Suzanne
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