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Old 06-07-2013, 10:23 AM #21
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Originally Posted by strizzlow20 View Post
Yes i brought this up to them and they said no chance.
Strizzlow, I'd like to check my understanding. Are you saying that they "wouldn't" do or send you for an eye exam?
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Old 06-07-2013, 11:01 AM #22
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Strizzlow, I'd like to check my understanding. Are you saying that they "wouldn't" do or send you for an eye exam?
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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Old 06-07-2013, 11:12 AM #23
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I think I understand your vision problem, I describe it as lookimg through heat rising off of a hot car, wavy kind of like a fun house mirror. I have double, blurry vision but sometimes I have "wavy" vision too. Last time it went away when I had IVIG.
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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Old 06-07-2013, 12:41 PM #24
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Originally Posted by strizzlow20 View Post
"...said I was lucky I didn't have constant blurred vision...

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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Old 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.


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Old 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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Old 08-22-2013, 12:05 PM #27
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Originally Posted by strizzlow20 View Post
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.
Well the follow up wasn't as good as I hoped. Saw Dr. Kennelly and their neuro-opthamologist. They don't think it's MG but don't know what the problem is. The eye doc said he didn't know where to go or who to see for the problem. I can't believe it.
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Old 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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Old 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.


Quote:
Originally Posted by limpy View Post
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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Old 09-22-2013, 04:49 PM #30
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Originally Posted by strizzlow20 View Post
(The title was supposed to be Need Advise, not New Advice, sorry )

Hello Everyone,

I was DX with MG in 2008. It mainly effects my bulbar muscles and my symptoms are mild. I have recently been told that my eye lids are weak and I have felt a general weakness and fatigue in my body. I also started having vision problems two weeks ago. It's not quite double, however I do notie if I look in a direction to the side (almost strain) it takes a while for my eyes to center focus. In my center field of vision I am noticing mild distortion and waviness. Things look wavy not blurred. I have seen an Optician, Neuro-Opthamologist, ENT who did a VENG which checks balance and looks for Nystagmus and Saccades, and my Neuro. When I told my doctor about this he was concerned because my eyes are being told they are healthy with the exception to some notice weakness at certain angles and my eyelids. This distortion/waviness which I can only describe as words seem to gently wavy in all direction when I am looking at them. It's not as bad if I close one eye, but it's still there. I am FREAKED OUT. So my doctor wanted to run tests to check for a bunch of things such as stroke, MS, and vasiospasms. I just feel like my eye sight has gotten worse and gets worse the more panicked I get.

In the past 2 1/2 weeks I saw all of these doctors and had a Brain MRI with and without contract, mri with and without contrast of the eyes, MRA, and C Spine MRI. I also had a CT scan before those because I went to the hospital. I can't put a name to it but the closest thing I can say is that its like a very mild form of Oscillopsia except for I am not impacted diferent when I am walking or sitting or laying. I don't know the name except for "distortion." I also had an EEG which tested the nerve transmission and brain for my eyes to brain, ears to brain, and limbs to brain, all came back normal with a small exception in the right leg which my Neuro said was minor and I have never had a problem there except for breaking a toe.

I have 0 optic neuritis and my Neuro said everything came back normal. I am seeing a Retinal Specialist Monday just to double check. I do not have any lesions on the brain which can be evidence for MS. All other testing such as visual field testing and the visual evoked potentials were normal. He seems to think this is my MG and he said he has heard of this before with people in MG because the muscles are continuing to weaken or move and cause a wavy effect (but I'm not so sure). I have yet to find anyone with this symptom on the internet. This is not blurring as much as it is distortion. I was almost in tears becaues I was sure this was MS and he said he doesn't think it is and that we can rerun the tests in 6 months becaue it can take a while for MS to show up. He also said we could do a lumbar puncture and if that came back negative for MS that he is 99.9% positive this isn't MS and just my MG acting up.

This is why I am reaching out. I am just wondering if anyone has had similar issues. It does get worse as the day progresses and gets worse when I am stressed. Xanax does reduce the symptoms (probably because stress is reduced) but I still have this symptom in the mornings now, just not as intense. I do have the General form of Myasthenia but just started noticing problems with my eyes the past couple of weeks. I noticed back in January I was having problem with my eyes focusing quickly and that prompted for my first eye exam in like 8 years. At that time, I did not have this symptom but advised I should get glasses and they said I have an astigmatism.

I'm scared and just looking for advice. I am getting the lumbar puncture next Friday, but so far, the only thing that has come back Positive is MG which we know I have issues with. I just don't think these symptoms are typical because I can't find it online. The stress is making everything worse. I have never taken any meds for my MG because everything has been mild. I'm tempted to start on some meds soon or ask for the Tensilon test to see if the eye symptom stops. I don't know. What do you guys think?

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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