Aa
First Timer..to this site
Could really use your collective experience on this site. My first appointment with a Neurologist will be on the 21st of this month. the point at where I am today started in Mid December when I came down with a severe chest and sinus cold, by the way I am 37. The morning after I was running a high fever I noticed I could not focus my eyes and in fact when I tried to read a computer screen it was near impossible. My eye were dry and they got very tired quickly. I chalked this up to being ill. About 3 days had past and it got to the point where it was not improving and why I decided to go see an optometrist. They gave me a battery of tests and did in fact prescribe me reading glasses. When the opto came in she mentioned that she was at first concerned with my eyesight being impaired in both eyes in the lower right hand quadrant of my field of view (this was determined from looking at a grid pattern) but mentioned her concern was diminished when I past some test where you look into some binocular like mechanism and hit a button every time you see a pin light come into you field of view. I still opted to go see my doctor who said you need to go see and opthamologist. The opthamologist determined quiet quickly that there was nothing wrong with my eyes and chuckled a bit when he heard I was prescribed glasses. He said my optic nerves look great and referred me to an Neuro Optho. I went and this doctor parroted the same thing that the nerves look great which means there is something going on in my head. I had an MRI the next day. 1 day later the doctor called and stated that I did not have a tumor however I had what were called white matter spots on my brain and diagnosed me with Homonyous Hemanospia (?) and recommended I see a Neurologist. He wanted me to repeat after him "I do not have MS but I am at risk for MS" (supposedly these are signs of this)
I scheduled to see a neurologist however I was scheduled to see the neuro optho again before this appointment iwth the Neurologist. I should mention that between the time of mid December to the date of these appointments with the Neuro Opth my eyesight had gotten 90% better. I say 90% because it was still a bit fuzzy in my left eye. However it was really only fuzzy when I was do high intense activities like sports working out etc.
So I went into the Neuro Opth last week (again this was a follow-up and I have yet to see a Neurologist) and he stated that though your eyesight may be better your optic nerves are now showing sign of damage (they are not pale in color) and he mentioned this is another sign of MS. I asked if my nerves could repair/regen and he said "no"
He mentioned it was good I was going to see a Neuro because with this now ocurring and the (now he mentions this to me) "the number of spots you have on your brain" we need to be monitoring this closely. He diagnosed me with Uhtoff's Syndrome.
After he said this and the last few days I know I have had this symptom for maybe 6 years..maybe longer. I have now been on site after site and I am trying to figure out what to expect next. i.e. is this going to progress and how.
I am in shape, I eat right, work out daily, have no history of this in my family. I did however grow up with severe migraines. Just trying to stay positive because I do not believe that I have MS. The doctor however was so quick to focus on MS when it looks to me like there are so so many "differential diagnosis" that this could be.
recently, like favoring a bad ankle to the point that you sprain the other ankle, I am reading about all the symptoms and now believe I am walking off balance, have tingling fingers, slurred speach and the like. I know the mind is a very powerful machine and just feel I may be bringing this on myself.
Thank you for any advice, comments, etc that you can offer.
I am grateful for this site!
Dawson
I scheduled to see a neurologist however I was scheduled to see the neuro optho again before this appointment iwth the Neurologist. I should mention that between the time of mid December to the date of these appointments with the Neuro Opth my eyesight had gotten 90% better. I say 90% because it was still a bit fuzzy in my left eye. However it was really only fuzzy when I was do high intense activities like sports working out etc.
So I went into the Neuro Opth last week (again this was a follow-up and I have yet to see a Neurologist) and he stated that though your eyesight may be better your optic nerves are now showing sign of damage (they are not pale in color) and he mentioned this is another sign of MS. I asked if my nerves could repair/regen and he said "no"
He mentioned it was good I was going to see a Neuro because with this now ocurring and the (now he mentions this to me) "the number of spots you have on your brain" we need to be monitoring this closely. He diagnosed me with Uhtoff's Syndrome.
After he said this and the last few days I know I have had this symptom for maybe 6 years..maybe longer. I have now been on site after site and I am trying to figure out what to expect next. i.e. is this going to progress and how.
I am in shape, I eat right, work out daily, have no history of this in my family. I did however grow up with severe migraines. Just trying to stay positive because I do not believe that I have MS. The doctor however was so quick to focus on MS when it looks to me like there are so so many "differential diagnosis" that this could be.
recently, like favoring a bad ankle to the point that you sprain the other ankle, I am reading about all the symptoms and now believe I am walking off balance, have tingling fingers, slurred speach and the like. I know the mind is a very powerful machine and just feel I may be bringing this on myself.
Thank you for any advice, comments, etc that you can offer.
I am grateful for this site!
Dawson
Hi, Welcome belatedly to the forum! You've had a nice taste of what things are really like on this board. I've never seen a group of people reach out to others with such sincerity, enthusiasm and good information as the people here offer! I am Quix, a member with MS (diagnosed last year) and was a physician in a former life. I try to add as much info as I can, but will find little to add to what you have already received - But, I'll still find something to say.
First - ROCK CHALK!!!! As a JayHawker by birth and the only member of my family NOT to go to KU (I almost went to KU Med School), we had real rejoicing last night!! Wow, What a fabulous game! Great times to live in Kansas!
Your course of symptoms after the infection in December is classic for the development of Optic Neuritis (ON). Your course describes it perfectly. The improvement you had, but with return of fuzzy vision after vigorous activity is the very definition of Uhthoff's Syndrome. In Optic Neuritis there is some demyelination on the optic nerve. Demyelination slows the conduction of the visual signal along the nerve. Even after the are of damage is "repaired" the myelin is not perfect. When the body temperature rises as is a fever, with vigorous activity, high ambient temps, etc. the vision problem can recur until the body cools down again.
You asked why the docs seemed so quick to jump to the thought of MS. The reason is that a person with ON alone, without any other symptoms and without any lesions on the MRI has about a 30% chance of developing MS within the next 3 years or so. If you follow those people out 7 or 8 years the chance of developing MS rises to just over 40%.
If you add in even "one" white matter lesion on the brain MRI, then the chance of subsequent MS rises to over 80%. That is why they have talked about MS. Now, you fall into a category called Clinically Isolated Syndrome. This is a single attack of a problem suggestive of demyelination in the brain (the optic nerve is actually part of the brain itself) coupled ideally with an abnormal MRI. The most classic form of CIS is what you have, Optic Neuritis. Current research results and the thinking of the majority of MS specialists in the world recommends offering one of the MS meds at this time, even though the diagnosis is not yet totally verified, but is very , very likely. The reason for this is that the MS meds statistically have been shown to delay the actual development of full-blown diagnostically definite MS. The meds work better earlier in the disease (the first several years) than later.
I also want to mention that there is a smaller group of neurologists in this country that do not recommend early treatment of MS or treatment of what sounds like mild MS. The leading proponents of this approach is the Mayo Clinic. I take issue with their reasoning - much of which is based on economic principles, but that is my opinion and I was not a neurologist.
Now, I have to re-emphasize what Rena and the others told you. Before anyone would go ahead and place you on meds, there needs to be a full workup to obtain other evidence pointing both toward and away from MS. In CIS, this would include a spinal tap. It must also include a huge battery of blood tests to rule out many of the MS mimics. You are correct that there are other conditions that can cause ON and brain lesions/spots (These are the same thing. ALL damage/abnormalities in the brain tissue are lesions, whether they are visible on MRI or not).
Now, no one here are online can or should diagnose ANYTHING, but we have been discussing your symptoms in the context of MS. You are now going through that weird process of examining all the other odd things that you have experienced in the past and are now wondering if some of them have been a part of this or of MS. That is normal. It is also normal to begin to doubt all the sensations you feel. No, you are not becoming a hypochondriac, lol! It is normal to self-examine and be a little hypervigilant at this point. Part of you, if you do not ordinarily have extreme health anxiety, will "know" which sensations seem truly out of the ordinary.
I second the recommendation to do a timeline of the unusual symptoms you rmember from the last 6 years, the episode of eye stuff, or whatever. You are invited to ask us if things you remember sound suggestive.
One last thing. Presenting with Optic Neuritis is one of the indications (if this is MS) that your course will be on the milder side. This is not set in concrete, but it sounds like ON is the major thing you have suffered for the last 6 years and this, in general, bodes well for having a milder course.
Welcome again.
Quix
First - ROCK CHALK!!!! As a JayHawker by birth and the only member of my family NOT to go to KU (I almost went to KU Med School), we had real rejoicing last night!! Wow, What a fabulous game! Great times to live in Kansas!
Your course of symptoms after the infection in December is classic for the development of Optic Neuritis (ON). Your course describes it perfectly. The improvement you had, but with return of fuzzy vision after vigorous activity is the very definition of Uhthoff's Syndrome. In Optic Neuritis there is some demyelination on the optic nerve. Demyelination slows the conduction of the visual signal along the nerve. Even after the are of damage is "repaired" the myelin is not perfect. When the body temperature rises as is a fever, with vigorous activity, high ambient temps, etc. the vision problem can recur until the body cools down again.
You asked why the docs seemed so quick to jump to the thought of MS. The reason is that a person with ON alone, without any other symptoms and without any lesions on the MRI has about a 30% chance of developing MS within the next 3 years or so. If you follow those people out 7 or 8 years the chance of developing MS rises to just over 40%.
If you add in even "one" white matter lesion on the brain MRI, then the chance of subsequent MS rises to over 80%. That is why they have talked about MS. Now, you fall into a category called Clinically Isolated Syndrome. This is a single attack of a problem suggestive of demyelination in the brain (the optic nerve is actually part of the brain itself) coupled ideally with an abnormal MRI. The most classic form of CIS is what you have, Optic Neuritis. Current research results and the thinking of the majority of MS specialists in the world recommends offering one of the MS meds at this time, even though the diagnosis is not yet totally verified, but is very , very likely. The reason for this is that the MS meds statistically have been shown to delay the actual development of full-blown diagnostically definite MS. The meds work better earlier in the disease (the first several years) than later.
I also want to mention that there is a smaller group of neurologists in this country that do not recommend early treatment of MS or treatment of what sounds like mild MS. The leading proponents of this approach is the Mayo Clinic. I take issue with their reasoning - much of which is based on economic principles, but that is my opinion and I was not a neurologist.
Now, I have to re-emphasize what Rena and the others told you. Before anyone would go ahead and place you on meds, there needs to be a full workup to obtain other evidence pointing both toward and away from MS. In CIS, this would include a spinal tap. It must also include a huge battery of blood tests to rule out many of the MS mimics. You are correct that there are other conditions that can cause ON and brain lesions/spots (These are the same thing. ALL damage/abnormalities in the brain tissue are lesions, whether they are visible on MRI or not).
Now, no one here are online can or should diagnose ANYTHING, but we have been discussing your symptoms in the context of MS. You are now going through that weird process of examining all the other odd things that you have experienced in the past and are now wondering if some of them have been a part of this or of MS. That is normal. It is also normal to begin to doubt all the sensations you feel. No, you are not becoming a hypochondriac, lol! It is normal to self-examine and be a little hypervigilant at this point. Part of you, if you do not ordinarily have extreme health anxiety, will "know" which sensations seem truly out of the ordinary.
I second the recommendation to do a timeline of the unusual symptoms you rmember from the last 6 years, the episode of eye stuff, or whatever. You are invited to ask us if things you remember sound suggestive.
One last thing. Presenting with Optic Neuritis is one of the indications (if this is MS) that your course will be on the milder side. This is not set in concrete, but it sounds like ON is the major thing you have suffered for the last 6 years and this, in general, bodes well for having a milder course.
Welcome again.
Quix
Good morning everyone. Hope your respective weekends were good. Here in Kansas it was pretty great with the KU Jayhawks defeating Carolina for a bid into the final game of the College Basketball NCAA tournament. Big game is tonight!!
Thank you again for all your advice. I will most definitely try and time line the symptoms. If I did not mention earlier I have already completed and MRI however I have yet to see the photos. Would it make sense to see them without direction from the Neuro?
I have spoken to my Optho Neuro relative to seeing an MS Specialist and he stated that Dr. Lynch, who I am seeing, of the KU med center is the best in the tri state area.
Good Idea to write down questions prior to being on site. My wife is also going to accompany this appointment on the 21st. I am not exactly looking forward to being a lab rat of sorts but hey it will be worth it to determine what is going on underneath the hood.
Have a great day everyone.
Thank you again for all your advice. I will most definitely try and time line the symptoms. If I did not mention earlier I have already completed and MRI however I have yet to see the photos. Would it make sense to see them without direction from the Neuro?
I have spoken to my Optho Neuro relative to seeing an MS Specialist and he stated that Dr. Lynch, who I am seeing, of the KU med center is the best in the tri state area.
Good Idea to write down questions prior to being on site. My wife is also going to accompany this appointment on the 21st. I am not exactly looking forward to being a lab rat of sorts but hey it will be worth it to determine what is going on underneath the hood.
Have a great day everyone.
WELCOME TO OUR CYBER FAMILY.
I CAN'T OFFER MUCH MORE THAN THE REST.
ANY QUESTIONS YOU HAVE FOR YOUR NEURO,MAKE SURE YOU WRITE THEM DOWN AND TAKE THEM WITH YOU.WE HAVE A TENDENCY TO FORGET ONCE IN THE NEURO'S OFFICE.
A TIME LINE OF SYMPTOMS WILL HELP YOU AND YOUR NEURO.
TAKING SOMEONE WITH YOU HELPS.
A GOOD NEUROLOGICAL EXAM SHOULD TAKE UP TO AN HOUR.
YOU REALLY SHOULD SEE A MS SPECIALIST IF POSSIBLE.
MS IS LIVEABLE,I'M 42 AND I HAVE GOOD DAYS AND BAD,BUT ALL AND ALL ITS MANAGEABLE.
I HAVE BILATERAL OPTICAL NEURITIS AND I JUST WENT THROUGH A BOUT OF HIGH FEVERS AND NOW MY EYES ARE ALL WONKY.BUT IN TIME THEY WILL HEAL.
GOODLUCK WITH YOUR NEURO APPOINTMENT,IF YOU DON'T AGREE WITH HIS DIAGNOSIS,YOU CAN ALWAYS GET A SECOND OPINION,WHICH IS GOOD ANYWAYS.
T-LYNN
I CAN'T OFFER MUCH MORE THAN THE REST.
ANY QUESTIONS YOU HAVE FOR YOUR NEURO,MAKE SURE YOU WRITE THEM DOWN AND TAKE THEM WITH YOU.WE HAVE A TENDENCY TO FORGET ONCE IN THE NEURO'S OFFICE.
A TIME LINE OF SYMPTOMS WILL HELP YOU AND YOUR NEURO.
TAKING SOMEONE WITH YOU HELPS.
A GOOD NEUROLOGICAL EXAM SHOULD TAKE UP TO AN HOUR.
YOU REALLY SHOULD SEE A MS SPECIALIST IF POSSIBLE.
MS IS LIVEABLE,I'M 42 AND I HAVE GOOD DAYS AND BAD,BUT ALL AND ALL ITS MANAGEABLE.
I HAVE BILATERAL OPTICAL NEURITIS AND I JUST WENT THROUGH A BOUT OF HIGH FEVERS AND NOW MY EYES ARE ALL WONKY.BUT IN TIME THEY WILL HEAL.
GOODLUCK WITH YOUR NEURO APPOINTMENT,IF YOU DON'T AGREE WITH HIS DIAGNOSIS,YOU CAN ALWAYS GET A SECOND OPINION,WHICH IS GOOD ANYWAYS.
T-LYNN
My doctor uses the words "spots" and "lesions" interchangeably when talking to me as a layperson with MS, because the spots on the MRI are actually lesions. However, "spots" can also be something different, let's say if it was a stroke, a brain bleed, or a tumor. So the two words really can't be used interchangeably for someone who doesn't have MS.
When I'm sick with a fever, I will nearly always have trouble with my vision. I can't even read the package to see how much medicine I need to take or see the TV well enough to watch it.
Everyone close to me was falling apart after I told them of my diagnosis, but I remembered that I've had problems for years and was able to keep things in perspective. I'm not in a wheelchair or even walking with a cane. I was actually relieved to know that I could finally take medicine that may help me and know kinda-sorta what to expect.
Best wishes,
Deb
When I'm sick with a fever, I will nearly always have trouble with my vision. I can't even read the package to see how much medicine I need to take or see the TV well enough to watch it.
Everyone close to me was falling apart after I told them of my diagnosis, but I remembered that I've had problems for years and was able to keep things in perspective. I'm not in a wheelchair or even walking with a cane. I was actually relieved to know that I could finally take medicine that may help me and know kinda-sorta what to expect.
Best wishes,
Deb
Hi and Welcome!
I can't offer any other words of advice than what has already been execellent said above, but just wanted to welcome you here to our little "family" and I hope you can get an explanation soon!
I'm also in limbo right now and it indeed does "suck"!
Take care, Pat :)
I can't offer any other words of advice than what has already been execellent said above, but just wanted to welcome you here to our little "family" and I hope you can get an explanation soon!
I'm also in limbo right now and it indeed does "suck"!
Take care, Pat :)
Welcome!!!! Hon, your first visit with a neuro should be no less than an hour. They do a lot of different tests on your reflexes, watch you walk, see how well you can touch your nose, they will do some sensory tests with a safety pin, they will look in your eyes. I would suggest writing a timeline, when your symptoms first started and so forth. Some neuros won't look at them but some will. I am with MCBCON and will also suggest an MS specialist.
We are all here for you Dawson and feel free to talk about anything. Please keep up posted.
Your Friend,
Spazie Ada
We are all here for you Dawson and feel free to talk about anything. Please keep up posted.
Your Friend,
Spazie Ada
Dawson,
The main thing for you to ask the neuro is to make sure he does the right testing to rule out the other mimics of MS. This can include blood test, Spinal tap, and evoked potential testing. And if nothing else shows up you may end up like me having to be monitored with repeat MRI's and regular Opthalmologist exams to keep a check on your vision. My neuro said he didn't see any evidence of a stroke but did not rule out vascular causes entireley. So I ask to have my blood tested for clotting. I have a family history of heart disease and I had a brother that had a massive heart attack and died at age 31. One month ago my first cousin had two massive strokes and died at age 28. They said the birth control pills she was on caused the blood clots. But I don't intend to take any chances. Even though my neuro doesn't think that the damage two years ago came from strokes I have asked to be sent to a hematologist( blood specialist ) . My appointment is on April 7th. I want to rule this stroke thing out for sure. Then after that I have an apointment with a reumatologist to get checked for Sjogren's syndrome which I found out can cause these white matter lesions as well. I have sevier dry eye and moderate dry mouth and some arthiritis in my knees, hips and Neck. These can be symptoms of sjogren's. So like the stroke thing the reumatologist will be able to rule out some more possibilities.
At the two year mark I have realized that the road to the correct dx can and usually is a long one. My neuro has told me that this still might end up being MS. How long will it take them to rule out everything else? Who knows, it has already been two years. I have figured out that they really don't know for sure and it is a watch and see type of deal. I am just trying to do what I can to keep them moving toward ruling out all other possibilities. I am not comfortable with just waiting and watching, because if I do have MS I am not being treated and am risking further disability. On the other hand if it is not MS like my neuro thinks then I don't want to take medication for something that I don't have. I only have one word for this STUCK!
Santana
The main thing for you to ask the neuro is to make sure he does the right testing to rule out the other mimics of MS. This can include blood test, Spinal tap, and evoked potential testing. And if nothing else shows up you may end up like me having to be monitored with repeat MRI's and regular Opthalmologist exams to keep a check on your vision. My neuro said he didn't see any evidence of a stroke but did not rule out vascular causes entireley. So I ask to have my blood tested for clotting. I have a family history of heart disease and I had a brother that had a massive heart attack and died at age 31. One month ago my first cousin had two massive strokes and died at age 28. They said the birth control pills she was on caused the blood clots. But I don't intend to take any chances. Even though my neuro doesn't think that the damage two years ago came from strokes I have asked to be sent to a hematologist( blood specialist ) . My appointment is on April 7th. I want to rule this stroke thing out for sure. Then after that I have an apointment with a reumatologist to get checked for Sjogren's syndrome which I found out can cause these white matter lesions as well. I have sevier dry eye and moderate dry mouth and some arthiritis in my knees, hips and Neck. These can be symptoms of sjogren's. So like the stroke thing the reumatologist will be able to rule out some more possibilities.
At the two year mark I have realized that the road to the correct dx can and usually is a long one. My neuro has told me that this still might end up being MS. How long will it take them to rule out everything else? Who knows, it has already been two years. I have figured out that they really don't know for sure and it is a watch and see type of deal. I am just trying to do what I can to keep them moving toward ruling out all other possibilities. I am not comfortable with just waiting and watching, because if I do have MS I am not being treated and am risking further disability. On the other hand if it is not MS like my neuro thinks then I don't want to take medication for something that I don't have. I only have one word for this STUCK!
Santana
Are you looking to specifically rule out MS? If so you should probably see an MS Specialist as opposed to a general neurologist.
An MS Specialist will generally first get a full history from you...this is where the time line comes in handy both for you and the specialist.
The next step would be a full in-office examination which generally should last at least 30 minutes, probably more. This exam will give your specialist information on your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. If this exam is less that 30 minutes, you should question why a full exam is not being done.
The next step would be to order an MRI. This is where an MS Specialist is especially important! While the Radiologist generally reads the MRI and sends a report to the neurologist. the MS Specialist will read the MRI themselves and are trained and have the experience to find lesions that are not seen by the radiologist.
If the MRI is inconclusive, the next step may be a Lumbar Puncture. This is a test whereby a small amount of spinal fluid is obtained and tested not only for the Oligloconal Bands found in MS but also for a myriad of other diseases.
If the Lumbar Puncture is inconclusive, the next step may be Evoked Response Testing where by the nerves are tested for their reaction.
The first step I would recommend however would be to ensure you are seen by an MS Specialist.
I wish you the best of luck in your journey to find an answer for your symptoms.
Lots of Hugs,
Rena
An MS Specialist will generally first get a full history from you...this is where the time line comes in handy both for you and the specialist.
The next step would be a full in-office examination which generally should last at least 30 minutes, probably more. This exam will give your specialist information on your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. If this exam is less that 30 minutes, you should question why a full exam is not being done.
The next step would be to order an MRI. This is where an MS Specialist is especially important! While the Radiologist generally reads the MRI and sends a report to the neurologist. the MS Specialist will read the MRI themselves and are trained and have the experience to find lesions that are not seen by the radiologist.
If the MRI is inconclusive, the next step may be a Lumbar Puncture. This is a test whereby a small amount of spinal fluid is obtained and tested not only for the Oligloconal Bands found in MS but also for a myriad of other diseases.
If the Lumbar Puncture is inconclusive, the next step may be Evoked Response Testing where by the nerves are tested for their reaction.
The first step I would recommend however would be to ensure you are seen by an MS Specialist.
I wish you the best of luck in your journey to find an answer for your symptoms.
Lots of Hugs,
Rena
WOW! I love the activity on this board. Really thought I was going to see some comments in days not minutes. Being a somewhat instant grat type person this truly brought a smile to my face.
Deb- to answer your question YES I did have a fever. This cold i had came with such severe coughing, long lasting/violent coughing that I could literally feel it jar my brain.
Are "White matter" spots actually lesions? Thanks again Deb. You are so right that I am up and walking, playing with the kids, etc. and am so so grateful. This brings a new perspective into my life regardless of what it comes out to be.
Heather,
Thanks for the kind words
CZ, That's what I thought on the HH diagnosis? (stroke, massage head injury etc. wsa truly confusing to me) Like I said the coughing was violent and I am sure my blood pressure was out of this world. I was just in for a physical before all this started and my blood pressure was normal. I have been smoke free for over a year but did tobacco (smoke and chewing tobacco) for 15 or so years.
Santanta, Thank you for your words and insight as well.
All,
I will keep you posted and again I thank you!
D
PS. What are the questions that I should be asking of this neurologist when I have my first visit? Will this first visit be lengthy? I would really like to get as many tests and answers back as soon as possible.
Deb- to answer your question YES I did have a fever. This cold i had came with such severe coughing, long lasting/violent coughing that I could literally feel it jar my brain.
Are "White matter" spots actually lesions? Thanks again Deb. You are so right that I am up and walking, playing with the kids, etc. and am so so grateful. This brings a new perspective into my life regardless of what it comes out to be.
Heather,
Thanks for the kind words
CZ, That's what I thought on the HH diagnosis? (stroke, massage head injury etc. wsa truly confusing to me) Like I said the coughing was violent and I am sure my blood pressure was out of this world. I was just in for a physical before all this started and my blood pressure was normal. I have been smoke free for over a year but did tobacco (smoke and chewing tobacco) for 15 or so years.
Santanta, Thank you for your words and insight as well.
All,
I will keep you posted and again I thank you!
D
PS. What are the questions that I should be asking of this neurologist when I have my first visit? Will this first visit be lengthy? I would really like to get as many tests and answers back as soon as possible.
Your experience sounds almost identicle to mine. I am 41 now, but shortly after my 39th birthday I had a sudden onset of vision disturbance while standing in the store. I could see the prices but suddenly could not make any sense out of what I was seeing. This progressed rapidly over the next week. I had light sensitivity(photo phobia), distorted vision( things that were straight looked curved) basically things looked out of shape and out of line. I deteriorated over three weeks time and ended up in the hospital. I had a lot of symptoms but I will focus on the visual ones since this is what you are experiencing. I did not as far as I know have an illness prior to this onset, but I did have a medication change six weeks prior to this.
I went to 5 eye doctors, all of which said that there was nothing wrong with my optic nerve or tetina. I had two of them perscribe me glasses for hyperopia( farsightedness). When I took these two perscriptions to fill them the technitian said she did not know how to fill them because they were like looking at perscriptions from two different people. They were only one month apart. She sent me back to the opthalmologist who checked my hyperopia and found that I did not have enough of it to need glasses. He basically said that my entire fundiscopic exam was completely normal, and that my VA was 20/20. The only things he found was some surface signs, blepharitis( infalmation of the eye lids) Meibomian gland dysfunction( this is the glands in the eyelid that secretes the oily substance that helps create the tear film ), and dry eye. He said now that I didn't need glasses and treated the surface symptoms and sent me home. But I couldn't see right. I still had all of these symptoms. So I kept going back and finally he done a visual field test.Just like the one you described.
It came back showing a left inferior harmoneous quadrant defect. This is finally, eight months later, when I was sent to a neurologist. He done an MRI and a VEP( visual evoked potential). The MRI showed multiple white matter abnormalties in the white matter,6 to 10 of them. The VEP showed diffused slowing . The first Neuro said MS, but didn't feel the need for further test and sent me out of the office with a bag full of Rebiff, an Ms medication. I wasn't comfortable because he had not even done a blood test to rule out anything else. So I got a second opinion.
The second Neuro ,and still my doctor today two years later, starting doing the other testing. All blood work came back normal. Spinal tap( LP) came back normal and showed no O banding. I have had repeat MRI's of the brain with and without contrast every six months for two years looking for changes, enhancement of lesions or new lesions. So far no changes at all. This neuro has dx me with ADEM, acute disseminated encephalomyelitis which means inflamation of the brain and or the spinal cord. It is almost identical to MS except for it is a monophasic illness, meaning one time attack that doesn't usually have relapes. It is usually preceded by a virus or imunization or can evern be spontaneous.
I was sent to an neuro- ophthalmologist too. He said that since the optic nerves looked normal that if I did have ON it was further back in the visual pathways somewhere between the back of the eyes and the brain. This is called Retoubular Neuritis. It is another form of ON with the same symtoms. I had all of these symptoms. I still can't focus or merge my two eyes together. I told the neuro- opthalmologist this and he said that it is not my two eyes that are not working together, that it was my two haves of my brain. My lesions are in the corpus collolsum. This is a bundle of nerves that conects the two hemisferes of the brain. It helps send information from one side of the brain to the other. When there is damage to this part the signals get confused and slowed causing the disfunction. That's why my visual field defect shows up on the left bottom corner on the grid, but I see the visual cut on the right bottom corner of my vision field. I also have right- left confusion.
This is complicated and hard to understand, but I have done nothing for two years but study this one subject trying to figure out why my vision went haywire. My visual field defect has improved, but is not gone. I did not recieve any steriods or any treatment for this so any improvement that I have had has been only with time. If you have anymore questions I would be glad to try to help you if I can.
Santana8
I went to 5 eye doctors, all of which said that there was nothing wrong with my optic nerve or tetina. I had two of them perscribe me glasses for hyperopia( farsightedness). When I took these two perscriptions to fill them the technitian said she did not know how to fill them because they were like looking at perscriptions from two different people. They were only one month apart. She sent me back to the opthalmologist who checked my hyperopia and found that I did not have enough of it to need glasses. He basically said that my entire fundiscopic exam was completely normal, and that my VA was 20/20. The only things he found was some surface signs, blepharitis( infalmation of the eye lids) Meibomian gland dysfunction( this is the glands in the eyelid that secretes the oily substance that helps create the tear film ), and dry eye. He said now that I didn't need glasses and treated the surface symptoms and sent me home. But I couldn't see right. I still had all of these symptoms. So I kept going back and finally he done a visual field test.Just like the one you described.
It came back showing a left inferior harmoneous quadrant defect. This is finally, eight months later, when I was sent to a neurologist. He done an MRI and a VEP( visual evoked potential). The MRI showed multiple white matter abnormalties in the white matter,6 to 10 of them. The VEP showed diffused slowing . The first Neuro said MS, but didn't feel the need for further test and sent me out of the office with a bag full of Rebiff, an Ms medication. I wasn't comfortable because he had not even done a blood test to rule out anything else. So I got a second opinion.
The second Neuro ,and still my doctor today two years later, starting doing the other testing. All blood work came back normal. Spinal tap( LP) came back normal and showed no O banding. I have had repeat MRI's of the brain with and without contrast every six months for two years looking for changes, enhancement of lesions or new lesions. So far no changes at all. This neuro has dx me with ADEM, acute disseminated encephalomyelitis which means inflamation of the brain and or the spinal cord. It is almost identical to MS except for it is a monophasic illness, meaning one time attack that doesn't usually have relapes. It is usually preceded by a virus or imunization or can evern be spontaneous.
I was sent to an neuro- ophthalmologist too. He said that since the optic nerves looked normal that if I did have ON it was further back in the visual pathways somewhere between the back of the eyes and the brain. This is called Retoubular Neuritis. It is another form of ON with the same symtoms. I had all of these symptoms. I still can't focus or merge my two eyes together. I told the neuro- opthalmologist this and he said that it is not my two eyes that are not working together, that it was my two haves of my brain. My lesions are in the corpus collolsum. This is a bundle of nerves that conects the two hemisferes of the brain. It helps send information from one side of the brain to the other. When there is damage to this part the signals get confused and slowed causing the disfunction. That's why my visual field defect shows up on the left bottom corner on the grid, but I see the visual cut on the right bottom corner of my vision field. I also have right- left confusion.
This is complicated and hard to understand, but I have done nothing for two years but study this one subject trying to figure out why my vision went haywire. My visual field defect has improved, but is not gone. I did not recieve any steriods or any treatment for this so any improvement that I have had has been only with time. If you have anymore questions I would be glad to try to help you if I can.
Santana8
Hello, I too have the Utohfs Phenomenon. The Homonyous Hemanospia is an interresting thing as well. It is seen in patients who have had a stroke as well. How old are you? Do you smoke, have high blood pressure etc.? Since they did the MRI I'm sure thats not the case. Lyme Disease is also something to concider. Lupus as well so make sure they are checking all possibilities. Good luck and sorry to hear about the recent episodes!
cz
cz
Welcome to the MS Forum. Deb really gives you some good advice and I mirror that advice.
You have come to a great place, to find out more about this thing called MS. This is one heck of a supportive and devoted group of people. You can count on us to be there, during the good times AND the bad.
Again, Welcome. We hope that you will post often my friend.
Heather
You have come to a great place, to find out more about this thing called MS. This is one heck of a supportive and devoted group of people. You can count on us to be there, during the good times AND the bad.
Again, Welcome. We hope that you will post often my friend.
Heather
I agree with MCBCON. Most people have better luck with an MS Specialist to rule out or for diagnosing MS.
The optic nerve is commonly attacked in MS. Uthoff's syndrome is also common in MS. Did you have a fever with your chest and sinus cold? Does your vision get blurry when you get overheated? The white matter spots may also be a sign of MS; however, there are several things that will cause lesions in the brain. Migraines may cause spots on the brain. I have migraines, but the location, the shape, the size, the reoccurance of active lesions pointed to MS for me. Other autoimmune diseases, like Sjogren's may cause white matter lesions.
Do know that having MS is not a death sentence. If you do in fact have it, you said that looking back you've had that particular symptom for years. You're still walking and up and about without any kind of treatment. However, if you do have it, it is necessary to get good treatment as soon as possible to help prevent problems in the future.
Best wishes, Dawson. Keep us posted as to what your doctor says on the 21st.
Deb
The optic nerve is commonly attacked in MS. Uthoff's syndrome is also common in MS. Did you have a fever with your chest and sinus cold? Does your vision get blurry when you get overheated? The white matter spots may also be a sign of MS; however, there are several things that will cause lesions in the brain. Migraines may cause spots on the brain. I have migraines, but the location, the shape, the size, the reoccurance of active lesions pointed to MS for me. Other autoimmune diseases, like Sjogren's may cause white matter lesions.
Do know that having MS is not a death sentence. If you do in fact have it, you said that looking back you've had that particular symptom for years. You're still walking and up and about without any kind of treatment. However, if you do have it, it is necessary to get good treatment as soon as possible to help prevent problems in the future.
Best wishes, Dawson. Keep us posted as to what your doctor says on the 21st.
Deb
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