Aa
At my wits end
I just need to vent. I mean, whose leg do I need to hump to get a good doctor or an MRI?? I had double vision that I got on video, in which my eye drifts inward while the other stays straight. I tell the neurologist and she says it's not neurological (what is it then???) and tells me to see my PCP and an opthamologist. I see the opthamologist just now and he says you probably have MS because of the numbness I had a few months ago, but if I order an MRI they'll probably block it. So I asked if the double vision was enough to warrant it, and he said that because it's transient it's nothing to worry about. I said, isn't that and nystagmus symptoms of MS? Wouldn't this be a new symptom? He said, no, none of those are symptoms of MS.
So, my question is, am I taking crazy pills? I thought UF shands was supposed to be a top medical facility, yet you guys seem to know more than they do. I have no idea what to do anymore.
So, my question is, am I taking crazy pills? I thought UF shands was supposed to be a top medical facility, yet you guys seem to know more than they do. I have no idea what to do anymore.
Hi I completely understand what you are going through !! I still haven't got a diagnosis after six months. I thought I might have Myasthenia Gravis but the neurologist said my blood test was a false positive !! My symptoms are more like MS but he said I haven't got it even though one of the MRI scans showed a lesion- he said i moved in the scanner !!!! These doctors like to use expressions like ' functional neurological disorder or conversion syndrome ( ie - psychological !! ) im so mad !!!
COMMUNITY LEADER
Usually the term borderline, from what I understand it to mean in eye tests including the OCT, is that the persons test results were within the 'normal' statistical parameters of the test. If you are confused just give the clinic a call and ask if borderline means, your test results were normal or not, i'm sure they will help clear up any confusion people have with test results, they probably do it all the time.
Cheers.......JJ
Cheers.......JJ
Thank you, Karryon, that's helpful and very sad about depression and MS! That seems like a horrible thing to add to an already horrible disease.
I'm not sure if this makes any difference, but I did take a look at the OCT results that the ophthalmologist just handed to me at the appointment without saying anything about it. It says I'm "borderline" in both eyes, and I have no idea what that means. More confusion...
I'm not sure if this makes any difference, but I did take a look at the OCT results that the ophthalmologist just handed to me at the appointment without saying anything about it. It says I'm "borderline" in both eyes, and I have no idea what that means. More confusion...
When it comes down to it "you" are your best advocate & therefor you need to go somewhere else to get your answers. You obviously are not getting anywhere at the centre you are attending.
I do have to clarify though that many people here on the MS forum have mental health issues from the MS progression itself or the stress of dealing with a chronic condition. As MS causes lesions in the brain unfortunately our mental health can be affected. After I was dx'd I started seeing a counsellor which I found tremendously beneficial.
As you are probably all too aware many of us have had our mental health questioned during the diagnostic process. This is one of the many mimics that have to be ruled out before labelling someone with MS. There are some terrific health pages at the bottom of this page that I recommend you look at. There is a good health page with "some" of the mimics. One of my favourite health pages is the lies my Neuro told me. This helped me soooo much during my dx & is great for a good laugh. :-)
In the time you are waiting on a new neurologist I can only suggest you keep a good time line of your symptoms. Take with you a typed concise list of what's happening now as well as previously & give a copy to the Neuro. Some docs like this especially if it is concise & easy to read. I know my Neuro appreciates this because of my speech & memory problems.
Good luck & keep us updated.
Karry.
I do have to clarify though that many people here on the MS forum have mental health issues from the MS progression itself or the stress of dealing with a chronic condition. As MS causes lesions in the brain unfortunately our mental health can be affected. After I was dx'd I started seeing a counsellor which I found tremendously beneficial.
As you are probably all too aware many of us have had our mental health questioned during the diagnostic process. This is one of the many mimics that have to be ruled out before labelling someone with MS. There are some terrific health pages at the bottom of this page that I recommend you look at. There is a good health page with "some" of the mimics. One of my favourite health pages is the lies my Neuro told me. This helped me soooo much during my dx & is great for a good laugh. :-)
In the time you are waiting on a new neurologist I can only suggest you keep a good time line of your symptoms. Take with you a typed concise list of what's happening now as well as previously & give a copy to the Neuro. Some docs like this especially if it is concise & easy to read. I know my Neuro appreciates this because of my speech & memory problems.
Good luck & keep us updated.
Karry.
No. Because it has only been in the morning, no one else has seen it. But I literally can't think of anything else it is. It wasn't a buzzing or vibrating, or even a subtle shaking; the numbers on my alarm clock were dancing back and forth. I know what I felt, I know that I was awake and conscious when I felt it, and it happened nearly every morning for about a month. It could be vestibular and not neurological, but I don't know. I doubt it's a seizure or a migraine, too, if it happened almost every morning.
I understand I have nothing to show for anything during office visits, except the video I took which apparently didn't matter, so that's a problem. And I'm not saying I do have MS. But I haven't had so much as a blood test, and I have several sudden problems that could be both neurological and potentially serious, and it feels wrong letting it go. If the first "episode" came and went and I was honkey-dorey afterwards, fine. But now I have had two occurrences of something and no answers, and doctors are either giving misinformation or very little of their time.
As for that link on diplopia, that's very helpful, but I still don't know what to make of it. For example, my eyes are misaligned, I know that for a fact, but it doesn't last long and then comes back to normal. I see double during that time, usually. In other words, it's not like a palsy. So I don't know how to read that chart.
I mean, at this point there is nothing to do. I've exhausted all options except for making an appointment with an outside neurologist. I appreciate your help a lot, and I know there might be nothing wrong, but I also find it difficult to ignore this or chalk it up to a somatoform disorder.
I understand I have nothing to show for anything during office visits, except the video I took which apparently didn't matter, so that's a problem. And I'm not saying I do have MS. But I haven't had so much as a blood test, and I have several sudden problems that could be both neurological and potentially serious, and it feels wrong letting it go. If the first "episode" came and went and I was honkey-dorey afterwards, fine. But now I have had two occurrences of something and no answers, and doctors are either giving misinformation or very little of their time.
As for that link on diplopia, that's very helpful, but I still don't know what to make of it. For example, my eyes are misaligned, I know that for a fact, but it doesn't last long and then comes back to normal. I see double during that time, usually. In other words, it's not like a palsy. So I don't know how to read that chart.
I mean, at this point there is nothing to do. I've exhausted all options except for making an appointment with an outside neurologist. I appreciate your help a lot, and I know there might be nothing wrong, but I also find it difficult to ignore this or chalk it up to a somatoform disorder.
COMMUNITY LEADER
I hear what your saying regarding the M/H idea and i do agree with you (!) though one of the problems the M/H idea can cause IF you are in a fish bowl health system, is once it's written down in you medical file, it never goes away until your M/H is fully assessed and you have the proof that it's wrong.
Many of us here have had our M/H assessed, and it definitely helps to get it off your list of possible causes when its wrong, and if having it on the list is causing any problems. I really do believe it can be a very beneficial step to take, especially if its hanging over your head and getting in the way of your health concerns being taken seriously but at the end of the day it is a personal choice for people to make or not.
It's still not very clear to me, if you have been diagnosed with your visual issues by the opthalmologist with corroborating test results OR if you are self dxing and naming your visual issues from what you experienced and matching it what you've read online.
Are you actually saying that the opthalmologist did not find any abnormal movement or alignment issues in your test results, so you have not actually been diagnosed with Nystagmus, or strabismus?
I actually think having specific visual diagnosis's, is a very significant point to keep in your minds eye. Cause and effect... even if the visual sx's you experienced are no longer happening, or even intermittently happening, if the cause was from a brain lesion (MS), the lesion damage would still of been evident during the testing. This article goes into all the different explanations of diplopia and eye movement disorders and it specifically details each cause and effect.
http://jnnp.bmj.com/content/75/suppl_4/iv24.full
When it comes to your vision, its very important to know 'exactly' what is going on, most of the time the actual cause of the visual sx, is a lot more common than the neurological causes, so the visual dx you have been given, would be significant to the overall picture.
Cheers........JJ
Many of us here have had our M/H assessed, and it definitely helps to get it off your list of possible causes when its wrong, and if having it on the list is causing any problems. I really do believe it can be a very beneficial step to take, especially if its hanging over your head and getting in the way of your health concerns being taken seriously but at the end of the day it is a personal choice for people to make or not.
It's still not very clear to me, if you have been diagnosed with your visual issues by the opthalmologist with corroborating test results OR if you are self dxing and naming your visual issues from what you experienced and matching it what you've read online.
Are you actually saying that the opthalmologist did not find any abnormal movement or alignment issues in your test results, so you have not actually been diagnosed with Nystagmus, or strabismus?
I actually think having specific visual diagnosis's, is a very significant point to keep in your minds eye. Cause and effect... even if the visual sx's you experienced are no longer happening, or even intermittently happening, if the cause was from a brain lesion (MS), the lesion damage would still of been evident during the testing. This article goes into all the different explanations of diplopia and eye movement disorders and it specifically details each cause and effect.
http://jnnp.bmj.com/content/75/suppl_4/iv24.full
When it comes to your vision, its very important to know 'exactly' what is going on, most of the time the actual cause of the visual sx, is a lot more common than the neurological causes, so the visual dx you have been given, would be significant to the overall picture.
Cheers........JJ
Yes, I know, which is why I tried to clarify my point. I had nystagmus (back and forth motion) starting in September-ish, which lasted for about a month. The double vision started a few weeks ago and is still there at times. That's the eye drift. I'm aware they're two different things, and I've experienced both, for sure.
Most Neurologist are slow. They watch over years before they commit to a diagnosis like MS. It took me a good two years to finally be diagnosed with MS with 5 MRIs which showed MS and all the other tests for MS positive. All the other tests for other illnesses like Lupus were Negative. It took a LP with 12 obands to finally get my Neurologist to commit.
Heck it took six years to be diagnosed with Cancer and it was Stage 4 by the time they started treating it.
The problem is we have lots of smart doctors who can only treat one part of the body in 15 minute appointments. Veterinarians do better because they look at the whole animal and do everything. They have more time. Plus their patients can't tell them anything. I worked for a Vet he diagnosed my deafness and a kidney stone. It took 4 months to get the human doctors to find the stone and he knew the first day. I wish I could go to a veterinarian for health care. You also get in faster and they understand pain and fear.
Alex
Heck it took six years to be diagnosed with Cancer and it was Stage 4 by the time they started treating it.
The problem is we have lots of smart doctors who can only treat one part of the body in 15 minute appointments. Veterinarians do better because they look at the whole animal and do everything. They have more time. Plus their patients can't tell them anything. I worked for a Vet he diagnosed my deafness and a kidney stone. It took 4 months to get the human doctors to find the stone and he knew the first day. I wish I could go to a veterinarian for health care. You also get in faster and they understand pain and fear.
Alex
Nystagmus is not the eye drift that you described, nystagmus is an extremely fast back and forth tremor of the eye ball.
Oh, and Sarah, I'm not sure what's going on with shands but I am definitely not the only one who has had problems with them. Multiple friends with multiple misdiagnoses and misinformation. I think it's just too big for its own good.
Okay, thanks everybody. Now to chillax and let go until I can figure everything out. Really, though, thank you to everyone!
I went to the ER when I was having my symptoms...being a nurse I knew that they would do a scan and I would get results faster. You tell any ER doc you're having numbness, parasthesias, double vision and speech/cognitive problems and they're going to do a scan. Just my 2 cents. It will cost you a lot more this way though. If you don't want to do that then I say find another neuro and insist on an MRI.
Bad doctor? oh we have a list somewhere of all the lies neuro's tell us, I think Laura knows where it is.
UF Shands……the "mother ship", worked at the other one, the one they closed recently. A shame, it was a wonderful place to work.
There are many neuro's who have no interest in MS and have not kept up with it. So you may have to keep asking around.
Keep a time line of your symptoms and when they appear. When they refuse an MRI, ask why and then why not do it to prove there is nothing there if they are so determined that there isn't. Make sure they do it with and without contrast if you talk them into it. I had to push to get mine done.
Hang in there, take a few deep breaths and put it on the back shelf for a bit. I worked graveyard shift and got told I was lazy (can anyone spell fatigue?) so I know where you coming from!
Welcome to our corner
Sarah
UF Shands……the "mother ship", worked at the other one, the one they closed recently. A shame, it was a wonderful place to work.
There are many neuro's who have no interest in MS and have not kept up with it. So you may have to keep asking around.
Keep a time line of your symptoms and when they appear. When they refuse an MRI, ask why and then why not do it to prove there is nothing there if they are so determined that there isn't. Make sure they do it with and without contrast if you talk them into it. I had to push to get mine done.
Hang in there, take a few deep breaths and put it on the back shelf for a bit. I worked graveyard shift and got told I was lazy (can anyone spell fatigue?) so I know where you coming from!
Welcome to our corner
Sarah
Thanks, JJ, but I think I'm doing a poor job of explaining everything. My nystagmus happened months ago in conjunction with numbness and tingling which lasted for several days. I sometimes get it now, but it's nowhere near what it was then. It's more like a subtle jerking. The "hours long" numbness happened about a week ago after I had been walking around for a while outside. Sometimes I get a little numbness in my left hand and arm, periodically, but when it started it did not go away for about four days. The nystagmus was definitely not strabismus, which I think is what I have now. When I was having nystagmus, my eyes were definitely jerking back and forth for several minutes and then calmed down. It was so bad I could not get out of bed until it ceased. I have never had that experience before in my life.
My double vision results from my eye drifting inward, and when I close one eye it goes away, which from what I've read (which is a bad thing to do, I know, but what else am I supposed to do??) means it's neurological. It's not dry eye, because my eyes are out of alignment. I have never, ever had anything remotely like it happen before, and it occurred shortly after I had pain in my right eye that lasted for about a week. He did not see any nystagmus or misalignment while I was there, but it's clear that my eyes are out of alignment at other times of the day. That was why I wanted to get it on camera.
As for whether or not I am mentally ill, well, I'll just say I do not have a mental illness. I might be overthinking and analyzing this, definitely, but that doesn't mean I'm mentally ill. And a doctor who has seen me once prior to something entirely unrelated and worthy of medical attention CANNOT diagnose mental illness in a matter of minutes. Period. So, while I know you'e trying to help with that, that's simply not what's going on.
I think I'm posting here too much, definitely, and I'll go away, but it might be the worst feeling in the world to feel like you're getting brushed off, especially when those people are saying things that go against institutions like the National Health Institute, ha, and things are happening to you suddenly and strangely. I've been a healthy person my entire life, an athlete, etc, and I've only really felt unhealthy in the last few years of my life, which in the last year has progressed pretty rapidly. I hope you can understand where I'm coming from. Anyway, I apologize for coming on here to whine so much, but when you have nothing, really, to nullify your fears, you feel compelled to get it out somewhere.
There is such a thing as a bad doctor. Human error, boredom, bitterness, ignorance, and poor memory will influence even the most educated and talented doctor, lawyer, mechanic, teacher, etc. They're not on a silver pedestal because they have a few degrees. They're definitely not a humanities major with a computer, haha, but they're often very wrong for very human reasons.
My double vision results from my eye drifting inward, and when I close one eye it goes away, which from what I've read (which is a bad thing to do, I know, but what else am I supposed to do??) means it's neurological. It's not dry eye, because my eyes are out of alignment. I have never, ever had anything remotely like it happen before, and it occurred shortly after I had pain in my right eye that lasted for about a week. He did not see any nystagmus or misalignment while I was there, but it's clear that my eyes are out of alignment at other times of the day. That was why I wanted to get it on camera.
As for whether or not I am mentally ill, well, I'll just say I do not have a mental illness. I might be overthinking and analyzing this, definitely, but that doesn't mean I'm mentally ill. And a doctor who has seen me once prior to something entirely unrelated and worthy of medical attention CANNOT diagnose mental illness in a matter of minutes. Period. So, while I know you'e trying to help with that, that's simply not what's going on.
I think I'm posting here too much, definitely, and I'll go away, but it might be the worst feeling in the world to feel like you're getting brushed off, especially when those people are saying things that go against institutions like the National Health Institute, ha, and things are happening to you suddenly and strangely. I've been a healthy person my entire life, an athlete, etc, and I've only really felt unhealthy in the last few years of my life, which in the last year has progressed pretty rapidly. I hope you can understand where I'm coming from. Anyway, I apologize for coming on here to whine so much, but when you have nothing, really, to nullify your fears, you feel compelled to get it out somewhere.
There is such a thing as a bad doctor. Human error, boredom, bitterness, ignorance, and poor memory will influence even the most educated and talented doctor, lawyer, mechanic, teacher, etc. They're not on a silver pedestal because they have a few degrees. They're definitely not a humanities major with a computer, haha, but they're often very wrong for very human reasons.
COMMUNITY LEADER
I'm truly sorry your feeling ignored and still getting the run around, it definitely doesn't help you understand what's going on, when your being given contradictory information but i want to try to give you some food for thought and 'possibly' alter the emotional impact this is causing you, so bare with me please.......
Take a step back for moment, put what your 'feeling' on the back burner and try looking at this with your analytical hat on and try to work out what you know for sure vs what you think you know!
Your PCP has formed the opinion that you 'may' have a pretty serious psychological condition going on, right or wrong, it is always going to be in your best interest to get that 'idea' fully investigated, so you can either get it off the table or deal with it appropriately. Keep in mind, it maybe total garbage but YOU need to know, absolutely know for sure, one way or the other and its a step you should make!
Your ophthalmologist has run tests and your eyes don't have any abnormalities consistent with a degenerative disease eg macular, inflamation, optic nerve damage etc which is really really good news! You do have visual issues though and i personally am not sure from what you've mentioned now and before, if you have actually been diagnosed with neurologically based diplopia and nystagmus or if that is what it 'could of been' but it's not the dx you've now got after testing.
Clarification points for you to consider...
Dry eye is the dx you've been given for your temporary morning diplopia and dry eye is a very common cause of diplopia (double vision) and it's not caused by lesions as diplopia caused by MS is......dry is a plausible causation.
Who dx you with Nystagmus? Are you dx with Nystagmus or is that what you thought was what was causing your double vision and eye to wander inwards?
Nystagmus isn't caused by dry eyes - "Nystagmus is caused by an abnormal function in the areas of the brain that control eye movements. Nystagmus may be either present at birth or develop later in life."
http://www.visionaustralia.org/eye-health/eye-conditions/nystagmus
What is Nystagmus - "Nystagmus may be defined as a periodic rhythmic ocular oscillation of the eyes. The oscillations may be sinusoidal and of approximately equal amplitude and velocity (pendular nystagmus) or, more commonly, with a slow initiating phase and a fast corrective phase (jerk nystagmus)."
http://emedicine.medscape.com/article/1199177-overview
What you are describing and calling Nystagmus, doesn't actually sound like Nystagmus from what I understand and experience. Your eyeball is moving, drifting inwards but its not bouncing, jerking or oscillating, so to me it sounds more like strabismus. My youngest has strabismus and he sees double as the eye is moving inwards and his eye eventually turns off and it goes back to seeing in singular again.
Nystagmus (acquired) is a neurological sign and connected to MS but if the vid your neuro saw wasn't consistent with Nystagmus, and his neurological tests were normal, then he wouldn't have any clinical signs to suggest MS or any other neurological condition as a possible causation. I don't actually think he's wrong in saying, what your eye is doing isn't neurological but what's possibly wrong is the idea that it's Nystagmus, which is why I think what you've been dx with is rather significant.
http://jnnp.bmj.com/content/75/suppl_4/iv24.full
Your opthalmologist's opinion is that your transient double vision is nothing to worry about, so he must not of found anything significant in his testing. Isn't it possible that what he was meaning by his comment "no, none of those are symptoms of MS." was that 'your visual sx' are not symptoms of MS?
You probably should also consider the 'possibility' that you are adding short term sx's, that you may be assuming to be more significant than they actually are, simply because they are sx of MS. For example the tingling/numbness of your arm was only for a couple of hours and that wouldn't usually be what happens if its been caused by a brain or spinal cord lesion ie MS.
I'm trying as I said, to give you some food for thought and an alternative way to look at what you know and have been dx with vs what your thinking and hopefully i've done that and its of some help in you working it out.
Cheers............JJ
Take a step back for moment, put what your 'feeling' on the back burner and try looking at this with your analytical hat on and try to work out what you know for sure vs what you think you know!
Your PCP has formed the opinion that you 'may' have a pretty serious psychological condition going on, right or wrong, it is always going to be in your best interest to get that 'idea' fully investigated, so you can either get it off the table or deal with it appropriately. Keep in mind, it maybe total garbage but YOU need to know, absolutely know for sure, one way or the other and its a step you should make!
Your ophthalmologist has run tests and your eyes don't have any abnormalities consistent with a degenerative disease eg macular, inflamation, optic nerve damage etc which is really really good news! You do have visual issues though and i personally am not sure from what you've mentioned now and before, if you have actually been diagnosed with neurologically based diplopia and nystagmus or if that is what it 'could of been' but it's not the dx you've now got after testing.
Clarification points for you to consider...
Dry eye is the dx you've been given for your temporary morning diplopia and dry eye is a very common cause of diplopia (double vision) and it's not caused by lesions as diplopia caused by MS is......dry is a plausible causation.
Who dx you with Nystagmus? Are you dx with Nystagmus or is that what you thought was what was causing your double vision and eye to wander inwards?
Nystagmus isn't caused by dry eyes - "Nystagmus is caused by an abnormal function in the areas of the brain that control eye movements. Nystagmus may be either present at birth or develop later in life."
http://www.visionaustralia.org/eye-health/eye-conditions/nystagmus
What is Nystagmus - "Nystagmus may be defined as a periodic rhythmic ocular oscillation of the eyes. The oscillations may be sinusoidal and of approximately equal amplitude and velocity (pendular nystagmus) or, more commonly, with a slow initiating phase and a fast corrective phase (jerk nystagmus)."
http://emedicine.medscape.com/article/1199177-overview
What you are describing and calling Nystagmus, doesn't actually sound like Nystagmus from what I understand and experience. Your eyeball is moving, drifting inwards but its not bouncing, jerking or oscillating, so to me it sounds more like strabismus. My youngest has strabismus and he sees double as the eye is moving inwards and his eye eventually turns off and it goes back to seeing in singular again.
Nystagmus (acquired) is a neurological sign and connected to MS but if the vid your neuro saw wasn't consistent with Nystagmus, and his neurological tests were normal, then he wouldn't have any clinical signs to suggest MS or any other neurological condition as a possible causation. I don't actually think he's wrong in saying, what your eye is doing isn't neurological but what's possibly wrong is the idea that it's Nystagmus, which is why I think what you've been dx with is rather significant.
http://jnnp.bmj.com/content/75/suppl_4/iv24.full
Your opthalmologist's opinion is that your transient double vision is nothing to worry about, so he must not of found anything significant in his testing. Isn't it possible that what he was meaning by his comment "no, none of those are symptoms of MS." was that 'your visual sx' are not symptoms of MS?
You probably should also consider the 'possibility' that you are adding short term sx's, that you may be assuming to be more significant than they actually are, simply because they are sx of MS. For example the tingling/numbness of your arm was only for a couple of hours and that wouldn't usually be what happens if its been caused by a brain or spinal cord lesion ie MS.
I'm trying as I said, to give you some food for thought and an alternative way to look at what you know and have been dx with vs what your thinking and hopefully i've done that and its of some help in you working it out.
Cheers............JJ
It sounds like it's time to move on & start a fresh with a new neurologist. Get a referral to someone you would like to see. Check out the reviews for the neurologist as well. Just don't give up.
It can get overwhelming & frustrating going through a diagnostic process. I'm sure it seems that is part of the criteria to get the patient stressed lol. :-)
I have heard that certain nystagmus we all have & is completely normal. I have double vision which is only sporadic as well & because of this the docs haven't spoken much about it.
Ultimately you need an MRI & I'm not sure why they won't allow this. Keep plugging at it & thanks for the funny opening statement in your post......it's always good to have a laugh.
Take care.
Karry.
It can get overwhelming & frustrating going through a diagnostic process. I'm sure it seems that is part of the criteria to get the patient stressed lol. :-)
I have heard that certain nystagmus we all have & is completely normal. I have double vision which is only sporadic as well & because of this the docs haven't spoken much about it.
Ultimately you need an MRI & I'm not sure why they won't allow this. Keep plugging at it & thanks for the funny opening statement in your post......it's always good to have a laugh.
Take care.
Karry.
Vent away that is what i have been doing today,so fed up with LTD company and too overwhelmed with it all, just want to climb into my shell and hibernate
Yes, that's where I went, as well as the opthalmology clinic at Shands. Since I'm a grad student at UF, my insurance is covered through Gator Grad Care, which works best with UF Health/Shands, but I think I can use it somewhere else too. I'm just going to forgo Shands altogether and seek someone outside the system.
Thank you!
Thank you!
Hi - Finding doctors who are willing to listen and do the work required to reach a diagnosis can be frustrating. Most of us have been to more than one neuro and or more than one MS specialist.
Because there is no smoking gun test for MS, its diagnosis requires commitment from the doctor. If the doctor is not willing to commit you will never get the diagnosis. Once a doctor has made up his or her mind, it can be very difficult to get them to admit they were wrong. I think your best bet may be to start with a fresh set of eyes.
I do not know what your insurance situation is. I also am unfamiliar with UF-Shands. Have you been in contact with anyone at:
UF Health Neurodiagnostic Center?
APPOINTMENT:
352-265-0334
ADDRESS:
1600 SW Archer Rd
Room 5117
Gainesville, FL 32610
Kyle
Because there is no smoking gun test for MS, its diagnosis requires commitment from the doctor. If the doctor is not willing to commit you will never get the diagnosis. Once a doctor has made up his or her mind, it can be very difficult to get them to admit they were wrong. I think your best bet may be to start with a fresh set of eyes.
I do not know what your insurance situation is. I also am unfamiliar with UF-Shands. Have you been in contact with anyone at:
UF Health Neurodiagnostic Center?
APPOINTMENT:
352-265-0334
ADDRESS:
1600 SW Archer Rd
Room 5117
Gainesville, FL 32610
Kyle
This is why I'm so frustrated. None of the doctors I've seen seems to know what they're talking about.
Double Vision can be a symptom of MS. It was one of my first symptoms. My brain stem lesion causes my double vision.
Alex
Alex
Except that he said it sounded a lot like MS and even told me where he lesions would be. But then he followed it up with saying double vision and nystagmus are not symptoms of MS and I just wanted to scream. He didn't want to order the MRI because he said the system (shands) would probably block it. That was literally the only reason.
So far, my symptoms have been:
--Extreme periodic fatigue with brain fog, slurred speech, and forgetfulness
--numbness and tingling in my left arm
--nystagmus
--double vision
--urinator frequency
--bowel problems
So far, my symptoms have been:
--Extreme periodic fatigue with brain fog, slurred speech, and forgetfulness
--numbness and tingling in my left arm
--nystagmus
--double vision
--urinator frequency
--bowel problems
I have MS and about a year ago she started having symptoms like mine were when I was first diagnosed, she went to the Dr and he knows we are sisters and even knowing her sister has MS he still said it is not MS and did not do the MRI,she could have had an MRI if she had pushed it but she never did,We have to remember that when we go to the Dr they are working for us and you are your best advocate,, i would go back tell him you want an MRI and if he says no ask what makes him so sure this is not MS, but remember there are many things that seem like MS and they are not...good luck
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