Do you have ms and vision problems?

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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 4:19 PM (GMT -6)   
Hi, when I first so doctors with my symptoms the first thing they would say is, sounds like ms. But after doing an mri they say its not. But now I have it stuck in my head that I have ms. I see sparkles, trails, afterimages, and extreme floaters. I can't even drive at night sometimes because of my trails. For example, if I look at a cars headlights I get bad afterimages and if I move my eyes up and down I get really long trails of the lights at night (if im at a red light I could sit there move my eyes up and down and get a red trail from the light, or green if light turns green)
Anyways, I have sensitivity to light especially at night also. I was wondering if anyone here has ms with similar vision problems or knows someone with ms with this problem. Im scared I have it because Ive read that maybe 10% of people with ms have normal mri's. I feel like Im the 10% because nothing else explains these vision problems. Please help!!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/14/2006 4:30 PM (GMT -6)   
Neurogurl said...
Hi, when I first so doctors with my symptoms the first thing they would say is, sounds like ms. But after doing an mri they say its not. But now I have it stuck in my head that I have ms. I see sparkles, trails, afterimages, and extreme floaters. I can't even drive at night sometimes because of my trails. For example, if I look at a cars headlights I get bad afterimages and if I move my eyes up and down I get really long trails of the lights at night (if im at a red light I could sit there move my eyes up and down and get a red trail from the light, or green if light turns green)
Anyways, I have sensitivity to light especially at night also. I was wondering if anyone here has ms with similar vision problems or knows someone with ms with this problem. Im scared I have it because Ive read that maybe 10% of people with ms have normal mri's. I feel like Im the 10% because nothing else explains these vision problems. Please help!!
Here is a link to the National MS Society's webpage, and an article about vision problems that are common with MS....none of which sound anything like what you're describing. 
 
 
Have you been diagnosed with optic neuritis?  An opthamologist would be able to easily determine that, simply by looking in to your eyes.  Have you been examined for migraine headaches, or other vision problems? It sounds like you've seen a neurologist...have you seen an opthamologist to explore further what might be happening with your vision?
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 12/14/2006 4:32 PM (GMT -6)   
I should add that I do have MS, and do have vision problems -- blurred vision when I'm over-tired or over-heated; when I had optic neuritis I lost color vision. I also had a period of time when one eye would not "track" -- would not move in coordination with the other eye. Most of that cleared up over time. I have problems at night now, but that is more due to aging than anything to do with having MS.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


frannie55
Regular Member


Date Joined Dec 2006
Total Posts : 29
   Posted 12/14/2006 5:42 PM (GMT -6)   

My 1st symptom was optic neuritis tho my neuro-or soon to be neuro- said and mri during an attack or soon after will not show the plaques in an mri as they are not yet formed.

Sclerosis=scarring and when you cut your hand you have a cut-it takes awhile to form a scar.  Same w/ms.  Throughout my years of ms I've experianced most symptoms you are describing and have permamantly lost all pheriphal vision.  I always was light sensitive.  Isn't it fun to describe your vision problems? eyes If I have a problem in 1 eye I wear a patch, yes, like Johnny Depp.  You can buy those patches at any drug/dept store. 

Good luck. :-)


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 5:46 PM (GMT -6)   
Wow...thanks so much for responding. I have never been diagnosed with optic neuritis. I have been examined for migraines but the doctors say you can't have the visual auras all day, only right before the headache (and of course in some cases, no headache). I have been seen by many neurologists who call my problem "a phenomena". When you were first diagnosed with ms, did you have an abnormal mri of your brain? Also, do you have anti-nuclear antibodies?? What were your initial symptoms? I have also been seen by an neuro-opthamologist who said i am describing palinopsia and visual snow. Well, its been a year, and recently I found a doctor who finally said, although it seems to be originating from the brain, did you ever have your heart checked because it could be originating from the heart. I never had my heart checked. Well come to find out I have some sort of hole in my heart also known to cause migraine with aura. WOW. But I don't see how that connects with the palinopsia. I would appreciate your feedback to this and also answers to my questions....thanks again!!!!!

frannie55
Regular Member


Date Joined Dec 2006
Total Posts : 29
   Posted 12/14/2006 6:26 PM (GMT -6)   
I've taken up watercolor painting as therapy and pasttime when waiting for
a picture to dry is why I kpop up online so fast!I just joined this forum last week looks like you did too!
I was diagonised 17 years ago and if you'll click onto my '1st diagonis by mri' or something like that it'll tell you what my last post said +more.
I still and always get all kinds of crazy vision problems due to the ms.  One of the hardest to describe and get my husband to believe I got double vision in 1 eye!  Every case of ms is different and I believe every case of vision problems are different too, ms or not.
My mom is 93 and lives w/us and wears glasses.  Her vision cannot any longer be correcet by glasses because her eyeballs themseles have gotten old and worn out.
Always something, isn't there!  Good luck to you and Better luck to keep your mind off unknown and uncontrollable problems.  It's still hard for me. :-)

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/14/2006 6:32 PM (GMT -6)   
Neurogurl said...
Wow...thanks so much for responding. I have never been diagnosed with optic neuritis. I have been examined for migraines but the doctors say you can't have the visual auras all day, only right before the headache (and of course in some cases, no headache). I have been seen by many neurologists who call my problem "a phenomena". When you were first diagnosed with ms, did you have an abnormal mri of your brain? Also, do you have anti-nuclear antibodies?? What were your initial symptoms? I have also been seen by an neuro-opthamologist who said i am describing palinopsia and visual snow. Well, its been a year, and recently I found a doctor who finally said, although it seems to be originating from the brain, did you ever have your heart checked because it could be originating from the heart. I never had my heart checked. Well come to find out I have some sort of hole in my heart also known to cause migraine with aura. WOW. But I don't see how that connects with the palinopsia. I would appreciate your feedback to this and also answers to my questions....thanks again!!!!!
When *I* was first diagnosed with MS -- 23 years ago -- there were no MRI's at all.  I was diagnosed with optic neuritis, and had the vision problems I described (the loss of color vision, pain, one eye that didn't track...).  I can't answer the question about anti-nuclear antibodies...I don't know what those are.
 
I did a google search on palinopsia and found several sources. Here's one: http://en.wikipedia.org/wiki/Palinopsia
 
This is a sheer guess -- but the definition says that there is sometimes a vascular cause for it...and if you have a hole in your heart, seems reasonable to assume that your vascular system isn't working very well.
 
My first symptoms that led me to a doctor who diagnosed MS (based on clinical signs, an evoked potential and a lumbar puncture) were increasingly weak legs, falling down, and foot drop.
 
If I were you I'd certainly follow up with the "hole in the heart" problem, and make sure to tell the doctor about the visual problems, and see if he describes some sort of linkage.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 8:17 PM (GMT -6)   
thanks again for you response. I am definately following up with this hole in my heart. So don't think I'm dumb (but I guess when it comes to this stuff i kinda am) but when we say vascular is that the heart..or the veins?  Or both? Like, if the heart has a defect is that considered heart disease? And is that the same as vascular disease. I guess what I'm asking is, if someone has a heart problem does that mean they have a vascular disease? I can't thank you enough for taking time out of your day to respond to me. Its comforting to know that there are people out there (although not the same disease) that can relate.  I try to ask doctors these questions and they always rush me. I understand that you are not a doctor but I appreciate you thoughts on this.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 8:42 PM (GMT -6)   
Also, does MS always have to run in the family?

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/15/2006 9:44 AM (GMT -6)   
Neurogurl said...
thanks again for you response. I am definately following up with this hole in my heart. So don't think I'm dumb (but I guess when it comes to this stuff i kinda am) but when we say vascular is that the heart..or the veins?  Or both? Like, if the heart has a defect is that considered heart disease? And is that the same as vascular disease. I guess what I'm asking is, if someone has a heart problem does that mean they have a vascular disease? I can't thank you enough for taking time out of your day to respond to me. Its comforting to know that there are people out there (although not the same disease) that can relate.  I try to ask doctors these questions and they always rush me. I understand that you are not a doctor but I appreciate you thoughts on this.
MS does NOT "always have to run in a family". In fact, there are many folks who are the only person in their family with MS, and while there is SOME evidence that there is a genetic link, the scientists are still trying to figure that out.
 
There IS evidence that autoimmune disorders "run in families". For example, I have MS, my mother had lupus, my aunt had rheumatoid arthritis...all autoimmune disorders. And there are dozens of autoimmune disorders; even diabetes is one of them.
The vascular system is the system in your body that moves blood from place to place, and the heart is the "pump". So veins and arteries are part of the vascular system, as is the heart.  If you have a problems specifically and solely with your heart, it might be said you have "heart disease".  If the problem really is your veins or arteries (like the senator who had a defect from birth which caused a stroke a few days ago) then it might be said that you have a vascular disease. 
Obviously EVERYTHING in the body is connected...so if there is a vascular problem, it can affect everything else, sooner or later. Or a heart problem, and so on. 
If I were you, I'd be in front of my doctor demanding answers about the "hole in my heart" - -what does that mean, exactly; does it need repairing; if it needs to be repaired, what does THAT mean (surgery?); could that be causing the vision problems I've been experiencing; what does it mean for my overall health? and so on. 
When you next see your doctor you might take someone with you -- a spouse, a close friend -- and have them take notes, and ask questions for you.  We all get rattled when we get in front of a doctor and forget what we wanted to ask, or feel rushed.  If you have someone with you, they can help manage the things you wanted to ask, but are too intimidated to ask, or keep track of all the information the doctor is throwing at you so quickly.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/15/2006 9:53 AM (GMT -6)   
Thanks so much. I am definately going to make a list of questions for my doctor and start asking questions. Sometimes the doctors make me feel rushed and unimportant and so I forget questions or I just think nevermind I'll ask next time.

Leenie
New Member


Date Joined Dec 2006
Total Posts : 9
   Posted 12/31/2006 6:30 AM (GMT -6)   
Has the doctor checked you for VHL (von Hippel Lindau syndrome)? www.vhl.org

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/31/2006 6:29 PM (GMT -6)   
NO.....but I'm about to find out what that is....

clemxiii
New Member


Date Joined Mar 2017
Total Posts : 18
   Posted 3/21/2017 7:01 PM (GMT -6)   
Neurogurl said...
Thanks so much. I am definately going to make a list of questions for my doctor and start asking questions. Sometimes the doctors make me feel rushed and unimportant and so I forget questions or I just think nevermind I'll ask next time.


Make sure to get a Optical coherence tomography (OCT) test. This allows all the layers of eye to be seen and more in depth stuff that they can't themselves see. I will be trying to get one as well.

clemxiii
New Member


Date Joined Mar 2017
Total Posts : 18
   Posted 3/21/2017 7:07 PM (GMT -6)   
Leenie said...
Has the doctor checked you for VHL (von Hippel Lindau syndrome)? www.vhl.org


Thanks for the response, from reading a bit about it, if this was indeed it and it started in the eye for example, wouldn't our comprehensive eye exams have ruled it out? Seems unlikely unless hypothetically, it was in the brain doing something.
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