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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-07-2013, 10:23 AM | #21 | ||
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06-07-2013, 11:01 AM | #22 | ||
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I had three eye exams. I saw an optician who said the eye was healthy. I saw a neuro-opthamologist who did a field vision test, dialation with exam, and an OCT scan of the eye. I told him that some of the lines appear to bow in and out when I look at the grid and he said it cannot be from the eyes. It's subtle bowing, but still "wavy." He only observed eyelid weakness and said I was lucky I didn't have constant blurred vision. He referred me to a retinal Specialist because the foveal (responsible for center field of vision) was pretty thick at around 300 when it's typically below that. The retina Specialist did a dye test and checked everything and said it was healthy. They both did agree my symptoms were odd so they weren't sure. My neuro doesn't think these symptoms are too unusual for MG but still did a thorough workup. I am having the MRIS redone on a GE 3T Excite HDXT because the first MRI machine was only a .3 Open Air MRI which isn't every good at detecting lesions. They were ok with me doing this , but the doctor is confident this is not MS. They see nothing wrong with the "better be safe than sorry" attitude and my insurance will cover the testing, so I am appreciative I have their support. I will continue with the steroids and Mestinon to see if anything changes.
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"Thanks for this!" says: | Fortunatos (06-07-2013) |
06-07-2013, 11:12 AM | #23 | ||
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I would say more of the funhouse mirror is the effect I am getting but it's wavy when I gaze. It's very weird, and new to me. I don't know if this was gradual change or sudden. I'm just trying to plug away.
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06-07-2013, 12:41 PM | #24 | ||
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I believe it was said with the best of intention. Most often, Doctors are saying they know from experience how bad it can get and that they are pleased it isn't happening to you. I just feel there is a better way to communicate that thought. I literally cringe when I hear people tell me that someone has said, "Well, it could be worse!" or..."Just be lucky you don't have..." or, "Oh that's nothing, I had..." It can and is construed as a very non-empathetic statement. It can be perceived as, "Hey, quit complaining!"...or..."Plenty of people who have it worse than you do!" It will shut communication down, and how painful is that?! Your pain, physical or mental, your concerns, and your feelings are as important as anyone else's no matter the degrees of illness! |
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"Thanks for this!" says: | mutant-robot (08-22-2013), strizzlow20 (06-07-2013) |
06-07-2013, 04:37 PM | #25 | |||
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I had constant double vision outside a small central focal point. I went to my optomologist and got prism in my glasses and I can see much better now. The eye doctor said the same annoying thing though that my vision was doing well - considering I had MG.
kathie |
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07-24-2013, 05:57 PM | #26 | ||
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I'm just following up on this thread in case by some small chance someone else in the world has a similar issue that they can't explain. the 3T MRIs were all clean. My ENT checked my hearing and inner ear pressure, it's good. Their ENT Specialist from the University of Florida thinks everything is fine and thinks a CT scan of the inner ears to rule out Superior canal dehiscence would be a good idea but I am waiting on that. I have an appt. with Dr. Kennelly at the Mayo Clinic to evaluate my condition and repeat an EMG there in less than 4 weeks. She specializes in Myasthenia Gravis. This is all probably just MG causing bilateral weakness in both eyes and therefore closing one eye is not resolving the issue, atleast I hope so. I've limited the amount of submissions I post on here, and I will follow up with the results and what they're reccommending for treatment. Have a good day.
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08-22-2013, 12:05 PM | #27 | ||
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09-13-2013, 04:15 PM | #28 | |||
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I wanted to reply to this post because I recently began having wavy vision as well. Last week, I was in the Walmart parking lot resting before I went in. I had noticed earlier that my vision was a little off, but couldn't put my finger on the problem. As I was watching people crossing the parking lot, I noticed that, especially in my left eye, there was a sort of irradessence and waviness to the left side of my vision. I could see the people, but when I tried to see their faces, I could not focus and see what they looked like. The waviness was almost like looking into a fish tank with a very slight movement in the water and was only on the left side in a sort of arc or semicircle. I also lost my lower peripheral vision on that side. I panicked a little because I had just gotten over some problems with my eyes, and was told to call if I noticed any differences in vision.
I decided that maybe I had overdone it that day, so I took an extra dose of mestinon and headed home before it got any worse. By the time I got home, it had cleared up. This morning I had the same problem only in my other eye, so I immediately took another dose of mestinon, sat down and relaxed and closed my eyes and within 15-20 minutes it was completely gone. I thought about this post when I experienced this. |
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09-21-2013, 03:12 PM | #29 | ||
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Thanks Limpy. Sounds like an ocular migraine to me . I hope you're feeling better. This movement issue I have been having is 24/7 since April. I have some balance and inner testing to do in Miami to check for vestibular loss that may be causing the problem.
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09-22-2013, 04:49 PM | #30 | ||
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I had most of the same issues when I first was diagnosed. My Opthomologist was the first one to recognized it. Most went away though when I first started on meds. Now it only comes back slightly when I am tired or extremely hot. And yes stress does seem to exhasperste the symptoms. It will get better..... |
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