Author Topic: Diplopia  (Read 252 times)

Scottietottie

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Diplopia
« on: January 12, 2022, 11:57:09 AM »
Hi  :)
2022 hasn't got off to a great start. I've been told by an ophthalmologist that I mustn't drive any more.
Apparently I have bilateral symmetrical opthalmoplegia, causing intermittent diplopia (double vision) 

Now I don't know if this is an SjS thing or not. needless to say I've googled - and dry eye is mentioned but not as the most likely cause. Some of he most likely causes I really don't want to know about.

With Covid running rife it  could take awhile to get any answers. I have a telephone consultation with an ophthalmologist lined up for March although that sounds pretty useless to me. Waiting for a neurology appointment but no idea when.

I don't remember reading much about diplopia on here. Have any of you had similar experiences?

take care - Scottie  :)
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meirish

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Re: Diplopia
« Reply #1 on: January 12, 2022, 09:04:55 PM »
Scottie, I am so sorry to hear this. The first thing that came to me is that it seems that you have talked of the question of having myasthenia symptoms off and on. Just to let you know that myasthenia can cause blurred vision and I am just wondering if you have had any testing for myasthenia.

Myasthenia is such a weird disease. I had so many symptoms over the 40 years I had issues. I didn't have blurred vision all that much in the years prior but it sort of crept up on me the last couple of years. By night time I would have trouble reading and that is because of the fatigue that ones muscles seem to have.

I had some other strange symptoms, or so I thought, but one was that when I would swallow sometimes food would go up into my nose and I would have to blow the food out. I also had problems blowing up a balloon and when I was working as  nurse I would have to pass my CPR certification every couple of years. It was always a struggle for me I it took me so long to find a space of time that I could blow hard enough to inflate Resusa Annie.

Another issue I had for years that sort of ruled how I wore my hair was that I just could not stand to hold a curling iron. I would get such tired painful arms that I would just wear my hair short and get some quick perms. Do you ever have drooping eye lids. They don't have to droop a whole lot. Just check in the evening to see if one of your eyes, or both have lids that droop enough to sort of look more closed than usual. Sort of check where the lid is in relation to the pupil. It may not show up during the day so a doctor would not notice it.

Do you have episodes of fatigue that are not really bad weakness but a feeling like you just need to lie down and rest or you could die standing up. I did that most of my adult life and would have to take a lay down rest quite often some days. I would rest an hour or so and go back to whatever I was doing. Scrubbing floors on my knees darn near killed be because of all movements involved....but this was not all the time.

There are several types of myasthenia and one is called Ocular Myasthenia gravis. May help to do some searches on this. One drug that can help with muscle weakness is called Mestinon or Pyridostigamine. This is the same thing as the nerve gas the troops carry to inject themselves with if they get exposed to nerve gas. I had to take this medication 3 times a day or more if my weakness get worse. Also, with myasthenia there are drugs given IV mostly that are immune suppressants that can be given to myasthenia patients.

I would be very aggressive about getting in to see your neuro for that assessment. There are neurologist who specialize in myasthenia. The new neuro clinic I go to has a gal who is a neurologist and an ophthalmologist which is really great for people with these issues. Also the ocular myasthenia is not as rare as one would think. Just some suggestions. I bet with some research you could find some good helpful information. Also, how is your swallowing? Do notice that you might have some issues with swallowing more that previously? Hope this info helps.

Also, England or Great Britain has a Myasthenia gravis organization. I had found it years ago and it was quite helpful. I do not remember the name but I bet you can find that with a search also. Good luck, girl. Hugs meirish


Scottietottie

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Re: Diplopia
« Reply #2 on: January 14, 2022, 06:12:22 AM »
Hi Irish  :)

Thank you for that reply. My arms do not like holding up hair straighteners or hair dryers and the Ophthalmologist did point out that I appeared not to like holding my specs up to look through the reading bit of them.

I did see the neurologist before and he did a blood test for myasthenia but it came back negative. He seemed to think that was pretty definitive. The ophthalmologist has sent her findings to him though - so I hope to see him in the not too distant future.

The ophthalmologist gave me a patch to put on one side of my glasses which she said would reduce the double vision when it occurs but it doesn't help. Both eyes seem to be able to see double in slightly different ways - worse when tired - but not every day or all of the time.

Guess time will tell! Anyway - thanks.

Take care - Scottie  :)
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meirish

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Re: Diplopia
« Reply #3 on: January 14, 2022, 08:10:03 PM »
There is another test for myasthenia and I don't remember the name of it. Hope I can find it for you. Also, I had the antistriated muscle antibody blood test that was very high. This is not the usual blood test used Achr or whatever. But, it is usually positive in people who have problems with the thymus gland that occurs with myasthenia. The interesting thing is that I had no issues with my thymus gland but yet I have all these weird positive symptoms which occur in myasthenia. An old aunt of mine had many similar symptoms like mine plus the problems with many infections.

This was back in the 50's and next couple of decades. She would have to be hospitalized and given antibiotics IV plus many injections in muscle of gamma globulin. This was way before the intravenous gamma globulin was used and very little testing was available for lots of these types of issues.

I had told my immunologist about this and he was very interested as it said it could be a familial...hereditary like thing that was hard to diagnose. I just saw a new neurologist who is almost as old as I am. He is knowledgeable and went over so many things with me. He was troubled by my unusual positive blood work and wanted to do several different blood work and tests to "prove" that I did have myasthenia. By the time our visit was over he decided not to do any testing as all the things I described were symptoms of myasthenia plus my symptoms would go away or improve with Mestinon or Pyridostigamine. I was so thankful that he has the ability to sort out this information. Also, my swallowing issues had improved on the IVIG plus interestingly the t-cell issues improved on IVIG also. T-cells issues are often associated with the thymus gland which is interesting in itself.

I told you this long bit of info because my simple thought always is that so many doctors get hung up on the significance of having positive tests and sometimes things don't work that way. Be interesting to see if you double vision would improve on Mestinon. Is your double vision less in the morning after lots of rest?? Good luck with this Scottie. Your issues are very suspicious for myasthenia. meirish

Scottietottie

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Re: Diplopia
« Reply #4 on: January 18, 2022, 04:29:02 PM »
Thanks Irish  :)
I will keep trying to find out. eyes do tend to be worse later in the day but it's weird - some days they are pretty good all day and then I'll have a bad day. No predicting how it will be till it happens.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
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Never do tomorrow what you can put off till the day after tomorrow!

meirish

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Re: Diplopia
« Reply #5 on: January 18, 2022, 08:38:19 PM »
Scottie, Myasthenia is sort of hard to predict. My eye issues vary from day to day. Sometimes I look in the mirror and I will have a droopy left lid but not enough to bother my vision. By night my vision can be troublesome, especially on the computer.

Weakness in arms and legs is the same. Sometimes not bothersome and other times I have difficulty picking up my feet when I walk. Sort of a little shuffle. I don't look bad with my myasthenia but when it hits there are times when I must take a pill and sit down and not move at all and just rest. Usually fall asleep and will awaken hour or two later and feel much better. As usually I can feel weak and lousy and people say "but you don't look sick". Gosh wonder where we have heard that before.

Am hoping you can find a neuro who will not be so set in their ways. Maybe a Myasthenia foundation or discussion forum in your neck of the woods will have the name of a good neuro. Good luck. meirish

Sorry I haven't done some research for you but I am the midst of having issues and testing. Will do some searching when I perk up a little.

Carolina

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Re: Diplopia
« Reply #6 on: January 19, 2022, 04:21:30 AM »
Wow, Scottie, I'll bet that's what I have.

It only affects my vision when I'm reading......I don't see things in the room as double...only the words on the page.

Some times there appears to be a partial page to the side of the read page, for example.

I also have been diagnosed with Macular Degeneration, so I don't know if that has something to do with the problem.

My retinal special (for MD) doesn't deal with this, so I've made an appointment with a regular ophthalmologist to address this problem.

This double vision thing doesn't occur all of the time...in fact right now it's calm.  But for two or three months in the Fall is was very strong.

It's always something.

Elaine
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