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Old 07-10-2013, 08:07 PM #1
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Default I Want to Give Up

I am over this crap. No answerz and no similarities to my vision problems as everyone else. Steroids don't work mention doesn't touch it. I seriously feel like giving up. Im not looking for a pitty party, i just want my vision back. Im hopeless.
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Old 07-10-2013, 08:14 PM #2
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Originally Posted by strizzlow20 View Post
I am over this crap. No answerz and no similarities to my vision problems as everyone else. Steroids don't work mention doesn't touch it. I seriously feel like giving up. Im not looking for a pitty party, i just want my vision back. Im hopeless.
Have you seen a neuro-opto? When I got double vision I went to a neuro-opto and he put me on a high dose of Prednisone (80mg) and my double vision went away and hasn't returned.
Mike
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Old 07-10-2013, 08:28 PM #3
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my problem is tbi effects, but I can relate to the hopeless part. not sure what to say except that I wish you weret going through this and I hope others with your issue respond here. there are people out there who care, especially at this site.
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Old 07-10-2013, 08:30 PM #4
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Yes. No double vision unless i get very tired. Each eye is the same. He said my eyelids were a little weak. If i.close an eye it doesn't help. He said my wavy vision is probably psycho somatic. That's what everyone said about my throat and speech issues toountil mg tested positive.
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Old 07-10-2013, 11:01 PM #5
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Quote:
Originally Posted by strizzlow20 View Post
I am over this crap. No answerz and no similarities to my vision problems as everyone else. Steroids don't work mention doesn't touch it. I seriously feel like giving up. Im not looking for a pitty party, i just want my vision back. Im hopeless.
Sorry you are discoraged. I, too, have the double vision. Prisms on my glasses help a lot--cured it till this week.
Sometimes when I am tired, it comes back even when wearing the prisms. I got some that just afix to the inside of the lenses, not ground in. So, if I'm in a "good patch" I can peel them off till I need them again. They cost $45 per pair of glasses.

Neuro-opthalmologist told me they generally only work for a period of time, though.

Susan
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Old 07-10-2013, 11:43 PM #6
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Don't give up!.. My eye symptoms are the most unpredictable and respond the least to medications. My neuro-optomologist seem to think that was more-or-less the norm for MG. I did try prisms and since my eye problems are so consistent, prism helped a lot. In fact, when they put the prism glasses on me, I nearly jumped out of my chair from how well my vision came into focus. I would definitely see a neuro-optomlogist and try prisms. Do eye packs on your eyes relieve any of the symptoms. That helps me on really bad days.

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Old 07-11-2013, 06:19 AM #7
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@Strizzlow20, The psychosomatic comment from your doc seems a little lazy to me. The way your eye muscles point is going to affect how you perceive things. I have double vision on a bad day and I've also had the shapes of things look wrong. Double vision happens when the muscles can't steer both eyes to look in the same exact direction. If your left and right eye are consistently steered in the same different way, you will have double vision (and that's why prisms can help).

When your body tries to control your eyes and can't, the muscle movements can become jerky rather than smooth movements. When the right and left don't move in the same way consistently, I think it can cause things to look distorted in shape or wavy.

I don't know what your symptoms are exactly but it doesn't seem hard to imagine that poor muscle control could change what we see in many different aspects. If not, we must both be psychosomatic.
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Old 07-12-2013, 08:54 PM #8
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Originally Posted by gr8ful View Post
@Strizzlow20, The psychosomatic comment from your doc seems a little lazy to me. The way your eye muscles point is going to affect how you perceive things. I have double vision on a bad day and I've also had the shapes of things look wrong. Double vision happens when the muscles can't steer both eyes to look in the same exact direction. If your left and right eye are consistently steered in the same different way, you will have double vision (and that's why prisms can help).

When your body tries to control your eyes and can't, the muscle movements can become jerky rather than smooth movements. When the right and left don't move in the same way consistently, I think it can cause things to look distorted in shape or wavy.

I don't know what your symptoms are exactly but it doesn't seem hard to imagine that poor muscle control could change what we see in many different aspects. If not, we must both be psychosomatic.
Spoke to the neuro today. He is sending to the Mayo Clinic. I will be making arrangements to see them see after I fork out 500 for a past bill that I owe. I am also going to Shands Medical Center at the University of Florida next Friday for them to look into balance and vision issues. These are my last steps. 2nd sets of MRI came back fine with no lesions or tumors. Doctor still thinks the eye issues are from MG but some of the sensory issues such as tingling aren't consistent with MG. I have no idea of what kinds of test I will go through, I just hope they're thorough. He is also going to have them look into LYME since my other eye issues started when I was 17 in New England. I have floaters, palinopsia, and some phenomenon where you see bright sparks darting in your vision when you look at something like the sky. There's a name for it I just can't remember. Anyways, I don't know. I think after this there's not much to do but to try to plug away. Doctor was ok with me with tapering off of Prednisone since it may skew some of the tests they will do. It's really hard and depressing sometimes.
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Old 07-12-2013, 08:59 PM #9
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Spoke to the neuro today. He is sending to the Mayo Clinic. I will be making arrangements to see them see after I fork out 500 for a past bill that I owe. I am also going to Shands Medical Center at the University of Florida next Friday for them to look into balance and vision issues. These are my last steps. 2nd sets of MRI came back fine with no lesions or tumors. Doctor still thinks the eye issues are from MG but some of the sensory issues such as tingling aren't consistent with MG. I have no idea of what kinds of test I will go through, I just hope they're thorough. He is also going to have them look into LYME since my other eye issues started when I was 17 in New England. I have floaters, palinopsia, and some phenomenon where you see bright sparks darting in your vision when you look at something like the sky. There's a name for it I just can't remember. Anyways, I don't know. I think after this there's not much to do but to try to plug away. Doctor was ok with me with tapering off of Prednisone since it may skew some of the tests they will do. It's really hard and depressing sometimes.
BTW, to get an idea of what I am seeing, I showed the illusion below to my doc on the laptop and came in with 2 pages worth of notes including timelines and symptoms. I heard this was smart to do, so I tried it and asked them to include it in my file.
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Old 07-12-2013, 11:04 PM #10
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I see things move like your photo when my eyes are 'tired'. Sometimes it's worse than the example you show above. I looked around the web to see what causes this effect and read the following:

"There's no solid explanation for illusory motion. Some visual scientists think it has to do with fixation jitter: involuntary eye movements that give the illusion that objects near what you're fixated on are moving. Others think that when you glance around the image, motion detectors in your visual cortex get "confused" by dynamical changes in neurons, and think you're seeing movements."

If the motion is caused by jitter (which I always thought it was), symptoms that affect eye motion would cause things to move around like your picture above. I especially think this could be true if your two eyes moved differently from one another.

Here's another picture with a different motion pattern:


I don't know why this motion happens, but I get it also. Rest and mestinon help me see best and I guess I'm lucky for that.

I hope you feel better. It's good you got some (hopefully) good referrals.

Last edited by gr8ful; 07-13-2013 at 08:10 PM. Reason: can't get it right the 1st time
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