Aa
Help with questionable Symptoms
I'm a 37 year old female
Though my A1C has always stayed below 7, I have had eye troubles since my early twenties. A scotoma in my left eye is actually what led me to the ophthalmologist and eventually a diabetes dx. My GP referred me to a neurologist who ordered a MRI and diagnosed my eye scotoma as a "static migraine".
(I'm going to break this up for ease of reading)
After my MRI, I should mention that the radiologist's report suggested that I had a MS plaque visible on my frontal lobe, but the neurologist declined to concur at the time. He believed that my symptoms were indicative of a ocular migraine. Meanwhile, 15 years later, I now have 6 scotomas in one eye and 8 in the other. I also experience flashes of light in daylight and in the dark and every time I blink.
When I cover one eye, 3/4 of my vision in the other eye seems to disappear and reappear almost rythmic behind a black "sheet". As of recently a huge grey scotoma (twice as large as others) appeared right in my line of vision and made driving almost impossible. It has since faded to appear as the others.
Lately, I have been experiencing dizziness/lightheadedness (especially when I'm warm) and extreme fatigue (more than usual) and am having blurry/double vision and pain behind both eyes upon moving them left/right up/down. On some days my scotomas are dark grey and become blind spots instead of transluscent. Symptoms are stronger on some days more than others.
I have summed up over the years that I needed to live with the "static migraine" dx (though the more I read about ocular migraines, the more I'm seriously questioning it). Now, post MRI 15 years, eye symptoms continue to darken and then lighten, but are always present.
Last week I saw my Opthalmologist and had a complete dilated eye exam...completely within normal limits as usual... No diabetic changes at all. My GP ordered an MRI after my Ophthalmologist's suggestion. (I had that MRI done (get this) in a traveling MRI Clinic in the back of 18-wheeler trailer) (I live in a smaller city, but not that small!) I was a bit disturbed when the tech said the radiologist didn't understand why I was having an MRI to rule out MS because "I'm not in the age range for that".
Though the MRI was suppose to be with contrast, for some reason they decided against it (probably because it was "unnecessary"!!) A nurse called to inform me that my MRI had no signs of MS but the report mentioned blah blah blah in some white matter, but that's probably due to changes in technology since my last MRI. I have since found out that the power of the MRI is a 1.5)
My GP has ruled out Myasthenia Gravis through bloodwork. I have a Neuro appt scheduled next week and hopefully they'll order a new MRI to look for progression/changes of said "MS plaque", just in case. In your opinion, what do these symptoms bring to mind? What tests would you order? What would you want to rule out?
If my MRI is within normal limits, or no change, what do you believe my next step should be? I want to make the most of my neuro appt next week since I'm driving 2.5 hours to a University Neuro Clinic recommended by the MS Society. I'd love to have some educational questions in mind. Thanks in advance for any help you can give.
Though my A1C has always stayed below 7, I have had eye troubles since my early twenties. A scotoma in my left eye is actually what led me to the ophthalmologist and eventually a diabetes dx. My GP referred me to a neurologist who ordered a MRI and diagnosed my eye scotoma as a "static migraine".
(I'm going to break this up for ease of reading)
After my MRI, I should mention that the radiologist's report suggested that I had a MS plaque visible on my frontal lobe, but the neurologist declined to concur at the time. He believed that my symptoms were indicative of a ocular migraine. Meanwhile, 15 years later, I now have 6 scotomas in one eye and 8 in the other. I also experience flashes of light in daylight and in the dark and every time I blink.
When I cover one eye, 3/4 of my vision in the other eye seems to disappear and reappear almost rythmic behind a black "sheet". As of recently a huge grey scotoma (twice as large as others) appeared right in my line of vision and made driving almost impossible. It has since faded to appear as the others.
Lately, I have been experiencing dizziness/lightheadedness (especially when I'm warm) and extreme fatigue (more than usual) and am having blurry/double vision and pain behind both eyes upon moving them left/right up/down. On some days my scotomas are dark grey and become blind spots instead of transluscent. Symptoms are stronger on some days more than others.
I have summed up over the years that I needed to live with the "static migraine" dx (though the more I read about ocular migraines, the more I'm seriously questioning it). Now, post MRI 15 years, eye symptoms continue to darken and then lighten, but are always present.
Last week I saw my Opthalmologist and had a complete dilated eye exam...completely within normal limits as usual... No diabetic changes at all. My GP ordered an MRI after my Ophthalmologist's suggestion. (I had that MRI done (get this) in a traveling MRI Clinic in the back of 18-wheeler trailer) (I live in a smaller city, but not that small!) I was a bit disturbed when the tech said the radiologist didn't understand why I was having an MRI to rule out MS because "I'm not in the age range for that".
Though the MRI was suppose to be with contrast, for some reason they decided against it (probably because it was "unnecessary"!!) A nurse called to inform me that my MRI had no signs of MS but the report mentioned blah blah blah in some white matter, but that's probably due to changes in technology since my last MRI. I have since found out that the power of the MRI is a 1.5)
My GP has ruled out Myasthenia Gravis through bloodwork. I have a Neuro appt scheduled next week and hopefully they'll order a new MRI to look for progression/changes of said "MS plaque", just in case. In your opinion, what do these symptoms bring to mind? What tests would you order? What would you want to rule out?
If my MRI is within normal limits, or no change, what do you believe my next step should be? I want to make the most of my neuro appt next week since I'm driving 2.5 hours to a University Neuro Clinic recommended by the MS Society. I'd love to have some educational questions in mind. Thanks in advance for any help you can give.
Quix -
Thanks for your input. Yes, the Neuro from 15 years ago diagnosed me with "static" ocular migraine because it had been present for a few weeks and he couldn't say when it may go away. So of course over the last few years ( as the scotomas are increasing in number ) I've been writing them off as being "just another scotoma".
Meanwhile, not only are the scotomas ALWAYS there, they flash as lightbulbs when I blink or an object passes through my vision path ( ie. windshield wiper ) At night, (in the dark) with my eyes open or shut there is quite a light show going on ... small floating dots of light ( they appear green/red/yellow in color ) and I also get bright white lines of light in my peripheral vision.
When my GP ( God bless her, though ) said that the MRI I was having wouldn't show any damage to the optic nerve "because they don't do that, a CT would", I knew I was in trouble ... I felt I knew more about MS than she did ( and more about the diagnostic ability of an MRI, for that matter ).
After doing bloodwork to rule out Myasthenia Gravis, she really didn't hesitate to refer me to a Neuro ,,, Though I can tell by her answers to my questions that she probably doesn't believe these symptoms could be MS. I want to be refered to someone who knows enough about MS NOT to dx me WITH MS but who can also rule it OUT.
I'm pretty certain that when I go to UNC-Chapel Hill MS Clinic next week that they will order another MRI WITH contrast and hopefully a VEP, bloodwork etc. I pray that they do not dismiss my symptoms as being diabetes related or dismissed period ... How completely devastated will I feel being written off !? ( my greatest fear ... I realize how frustrating it is to get an accurate dx when dealing with these type of sx )
When the nurse gave me the results of the MRI, I know her well enough to know that she was just passing along the "no signs of MS" results from my GP. Since I see my GP every three months for an A1C, they're comfortable handling a lot of stuff over the phone with me ( as they know their schedule is loaded and it's not exactly easy for me to get to the doctor ( 30 min drive ) after work ( I teach 2-year-old preschoolers ) and before I have to pick up my 10 year old from school.
I found this forum by accident while looking for MS answers ... I must say, over the last several weeks, a lot of my questions have been answered by material posted on this community forum. Answered more clearly, and accurate I must say, than some of the material on the web which sometimes contradicts itself.
Thank you so very much for being so active in this forum, I know you've been a God send for many, many people ( including me now! ). I'm so relieved my post was taken seriously (even though I pasted it like 7 times by accident ... I was scared you'd think I was a NUT.
Thanks again ... by the way, ny name is Alisa.
Thanks for your input. Yes, the Neuro from 15 years ago diagnosed me with "static" ocular migraine because it had been present for a few weeks and he couldn't say when it may go away. So of course over the last few years ( as the scotomas are increasing in number ) I've been writing them off as being "just another scotoma".
Meanwhile, not only are the scotomas ALWAYS there, they flash as lightbulbs when I blink or an object passes through my vision path ( ie. windshield wiper ) At night, (in the dark) with my eyes open or shut there is quite a light show going on ... small floating dots of light ( they appear green/red/yellow in color ) and I also get bright white lines of light in my peripheral vision.
When my GP ( God bless her, though ) said that the MRI I was having wouldn't show any damage to the optic nerve "because they don't do that, a CT would", I knew I was in trouble ... I felt I knew more about MS than she did ( and more about the diagnostic ability of an MRI, for that matter ).
After doing bloodwork to rule out Myasthenia Gravis, she really didn't hesitate to refer me to a Neuro ,,, Though I can tell by her answers to my questions that she probably doesn't believe these symptoms could be MS. I want to be refered to someone who knows enough about MS NOT to dx me WITH MS but who can also rule it OUT.
I'm pretty certain that when I go to UNC-Chapel Hill MS Clinic next week that they will order another MRI WITH contrast and hopefully a VEP, bloodwork etc. I pray that they do not dismiss my symptoms as being diabetes related or dismissed period ... How completely devastated will I feel being written off !? ( my greatest fear ... I realize how frustrating it is to get an accurate dx when dealing with these type of sx )
When the nurse gave me the results of the MRI, I know her well enough to know that she was just passing along the "no signs of MS" results from my GP. Since I see my GP every three months for an A1C, they're comfortable handling a lot of stuff over the phone with me ( as they know their schedule is loaded and it's not exactly easy for me to get to the doctor ( 30 min drive ) after work ( I teach 2-year-old preschoolers ) and before I have to pick up my 10 year old from school.
I found this forum by accident while looking for MS answers ... I must say, over the last several weeks, a lot of my questions have been answered by material posted on this community forum. Answered more clearly, and accurate I must say, than some of the material on the web which sometimes contradicts itself.
Thank you so very much for being so active in this forum, I know you've been a God send for many, many people ( including me now! ). I'm so relieved my post was taken seriously (even though I pasted it like 7 times by accident ... I was scared you'd think I was a NUT.
Thanks again ... by the way, ny name is Alisa.
Great name! You have some eye stuff going on that does not make sense. Static migraine?? Are they saying that you have the ocular prodrome of a migraine as a completely permanent situation??
It is unfortunate, but totally believable that a physician would make the kind of remark about the ages of MS onset. It is a fact that the average age of MS diagnosis is 35 to 37 years. The average age of symptoms onset is 29 to 33 years. So the doc was out to lunch and not coming home for midnight snack.
You need to get the actual report of the MRI. No one should get a report of an MRI that isn't totally normal except from the physician. I'm glad that the ophthalmologist has cleared you of diabetic retinopathy. Many of your symptoms are suggestive of optic neuritis (scotomas, flashing lights, pain with movement). An exam by an ophthalmologist will pick up less than half the cases of this disorder which is frequently associated with MS. Your neuro or the ophtho should order a VEP. Also a lesion on the optic nerve can often be seen on MRI.
Are you saying that the "blah, blah, stuff on the white matter" was written off by the nurse or dismissed as possibly being due to higher resolution of the most recent MRI???! Well, this is idiotic! The reason we develop higher resolution MRIs is to pick up things like white matter lesions that we couldn't see on machines of lower strength. We really need to know what the report says.
I also will try to get back with you by the weekend to help you formulate some questions. A timeline of the symptoms and problems you have had, when they started, how long they last, whether or not they ever got better and if they ever returned is a useful thing.
When I first began having problems that I now know were the MS appearing, I also had a sole, lonesome MS plaque in my frontal lobe. It was the only lesion I had for two full years. That was on a 3T of the brain, but early they were only doing images of the spine on a 1.5T. Only on the 3t of the spine did the rest of my lesions show up. So, we WANT to see more things when we move to an MRI machine with a higher strength.
Welcome to the forum. I hope we can all give you some good info for your visit to the MS Clinic.
Quix
It is unfortunate, but totally believable that a physician would make the kind of remark about the ages of MS onset. It is a fact that the average age of MS diagnosis is 35 to 37 years. The average age of symptoms onset is 29 to 33 years. So the doc was out to lunch and not coming home for midnight snack.
You need to get the actual report of the MRI. No one should get a report of an MRI that isn't totally normal except from the physician. I'm glad that the ophthalmologist has cleared you of diabetic retinopathy. Many of your symptoms are suggestive of optic neuritis (scotomas, flashing lights, pain with movement). An exam by an ophthalmologist will pick up less than half the cases of this disorder which is frequently associated with MS. Your neuro or the ophtho should order a VEP. Also a lesion on the optic nerve can often be seen on MRI.
Are you saying that the "blah, blah, stuff on the white matter" was written off by the nurse or dismissed as possibly being due to higher resolution of the most recent MRI???! Well, this is idiotic! The reason we develop higher resolution MRIs is to pick up things like white matter lesions that we couldn't see on machines of lower strength. We really need to know what the report says.
I also will try to get back with you by the weekend to help you formulate some questions. A timeline of the symptoms and problems you have had, when they started, how long they last, whether or not they ever got better and if they ever returned is a useful thing.
When I first began having problems that I now know were the MS appearing, I also had a sole, lonesome MS plaque in my frontal lobe. It was the only lesion I had for two full years. That was on a 3T of the brain, but early they were only doing images of the spine on a 1.5T. Only on the 3t of the spine did the rest of my lesions show up. So, we WANT to see more things when we move to an MRI machine with a higher strength.
Welcome to the forum. I hope we can all give you some good info for your visit to the MS Clinic.
Quix
My neuro has told me to keep the films - he even puts that in the order for the MRI. He says he would rather I have them than have them purged at some random point! Hope you get some answers! My sight isn't great and any little upset in that dept. can really rattle me!
My GP is great. I know she has already sent records to the Neuro clinic and I have the original MRI films and the original rad report ( I think I was suppose to return them to the hospital, but didn't know ... oops) But thank goodness I had them because I was told that 15-year-old MRI's would have been purged by now and impossible to have them to compare ... so there!
The fact that the MRI wasn't done with contrast is a problem, as contrast will show new lesion formation. You are definitely in the right age range for MS - I was diagnosed at age 37, and I'm 37 now.
Hi, I'm just a plain old forum member, no medical training, and no diagnosis for my condition. Just getting that out of the way.
I'm glad to hear that you've been able to live your life well during the time since your old MRI showed a lesion, but it sounds like you feel like things may be progressing. So it's good that you are seeing a neuro next week.
I'm sure you will get lots (and better) advice from others. One thought: Do you have a copy, either on disc/CD or on film, of either MRI's? It will probably help if you can bring copies of the MRI's, and the reports, to the appointment. Some doctor's like to order their own tests, but if you bring results with you, you might be able to speed things up and help the doctor help you.
It should like you have a pretty good idea of what symptoms started when. Perhaps briefly writing that up as a timeline to bring would also be a good idea.
Another general piece of advice is to ask the doctor to tell you what the possible diagnoses may be. This is an area in which I lack. I've seen several doctors who are not willing to suggest what my condition is. I think it is better to get an honest doctor who will give you a realistic idea.
I don't blame you for feeling unsatisfied with the explanations and care you have received.
Good luck.
I'm glad to hear that you've been able to live your life well during the time since your old MRI showed a lesion, but it sounds like you feel like things may be progressing. So it's good that you are seeing a neuro next week.
I'm sure you will get lots (and better) advice from others. One thought: Do you have a copy, either on disc/CD or on film, of either MRI's? It will probably help if you can bring copies of the MRI's, and the reports, to the appointment. Some doctor's like to order their own tests, but if you bring results with you, you might be able to speed things up and help the doctor help you.
It should like you have a pretty good idea of what symptoms started when. Perhaps briefly writing that up as a timeline to bring would also be a good idea.
Another general piece of advice is to ask the doctor to tell you what the possible diagnoses may be. This is an area in which I lack. I've seen several doctors who are not willing to suggest what my condition is. I think it is better to get an honest doctor who will give you a realistic idea.
I don't blame you for feeling unsatisfied with the explanations and care you have received.
Good luck.
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