Double Vision and Autoimmune Diseases like MG: Can anyone relate?

Posted by agirlthing1977 @agirlthing1977, Aug 8 8:07pm

Started having double vison after covid. Had MRI ,CT SCANS, MRA seen Neurologist & everything has came back Good. Seeing a Neuropathy doctor she diagnosed me as to having Myasthenias
Gravis autoimmune disease. She put me on
Prednisone steroid 20 mg tried that didn’t help bummed it up to 40 mg started to gain so much weight feeling horrible water retention light headed also didn’t help with double vision. Can anyone relate ? I’ve had this for 2 years and nothing or anything seems to help so depressing.

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Autoimmune diseases are so difficult to diagnose sometimes. You don't mention what your other symptoms might have been other than the double vision. Double vision turns up in other diseases. Prednisone is no picnic either. What is it supposed to be doing for you? Did they do any bloodwork? Do you have signs of inflammation in your bloodwork?

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I have myasthenia gravis. For many years I had double vision as a result (plus physical weakness when I did any repetitive movement), so I know how tiring it is to have double vision. I sympathise. MG is easy to diagnose through a blood test. I’ve been on Mestinon (nothing else) for decades, and it’s really the only long term effective treatment for MG that I know of. It had no side effects for me. I wish you good health in the future.

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@aspine

Autoimmune diseases are so difficult to diagnose sometimes. You don't mention what your other symptoms might have been other than the double vision. Double vision turns up in other diseases. Prednisone is no picnic either. What is it supposed to be doing for you? Did they do any bloodwork? Do you have signs of inflammation in your bloodwork?

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Yes I’ve had blood work it comes back good

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@aspine

Autoimmune diseases are so difficult to diagnose sometimes. You don't mention what your other symptoms might have been other than the double vision. Double vision turns up in other diseases. Prednisone is no picnic either. What is it supposed to be doing for you? Did they do any bloodwork? Do you have signs of inflammation in your bloodwork?

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Good morning., Thank you so much for responding. Im having a lot of pain in my lower abdomen and constant nausea. The inflammation came up on the CT scans. It's inflammation in my lower bowel and intestine. So far I keep hearing no one knows how to treat what I have. But the rheumatologists is trying to send me to the Mayo clinic in Phoenix to get treated. And I also have a colonoscopy coming up Monday, hoping to get some answers with that.

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@nedradenise

Good morning., Thank you so much for responding. Im having a lot of pain in my lower abdomen and constant nausea. The inflammation came up on the CT scans. It's inflammation in my lower bowel and intestine. So far I keep hearing no one knows how to treat what I have. But the rheumatologists is trying to send me to the Mayo clinic in Phoenix to get treated. And I also have a colonoscopy coming up Monday, hoping to get some answers with that.

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@agirlthing1977, @nedradenise, @aspine, and all…I've had double vision for many years, maybe 20-25…It's no fun and seems to get worse when I'm tired, upset, or have dry eyes are worse. Then, there are times it goes away. I find if I close one eye, usually the left since it's easier to close, I see fine but for a bit off for peripheral vision. Watching a movie or TV is really fun! At night watching tv I often cover one eye.

I was misdiagnosed several years ago with MG. Mis-diagnosed. I don't have it. There are several other reasons for double vision. I visit Mayo Florida and they think it's more of a muscular issue. It can be corrected by special lenses in glasses if it gets bad enough. Mine is worse recently, so may look into the glasses again. We'll see.

But, most importantly to me, you mentioned your bloodwork is good and it appears the double vision is the only symptom. Do you have other physical symptoms causing you problems? Also, what does the doctor say about the prednisone not helping? I'm surprised you are on prednisone with just double vision symptoms. Steroids are strong meds and while they saved my life when I had Sarcoidosis years ago and now off and on as needed for bronchitis or other issues, they can take a toll on the body in other ways. Aside from weight gain and bone issues, it changes your body-I began to look permanently pregnant due to the prednisone enlargement of my belly. I've recently lost about 35 pounds but still and always will have an enlarged belly. I get a moon face every time I take prednisone, have had unwanted hair growth on my face and arms, and other issues. So, while it can be a life safer, be aware of the possibilities associated with taking it.

Also, why does your doctor diagnose MG? Are you seeing a rheumatologist? neurologist? I think it's very important to do a lot of research, be your own advocate to find answers, to find the right answers…Fight for knowledge and then go forward to improve your health. It's a journey that can be dificult, challenging, and productive. I'm healthier now than I've been in many years…still have the same illnesses, but am dealing with them differently and have excellent doctors working with me.

Be well. Be better. Be blessed. Elizabeth

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@pmci

I have myasthenia gravis. For many years I had double vision as a result (plus physical weakness when I did any repetitive movement), so I know how tiring it is to have double vision. I sympathise. MG is easy to diagnose through a blood test. I’ve been on Mestinon (nothing else) for decades, and it’s really the only long term effective treatment for MG that I know of. It had no side effects for me. I wish you good health in the future.

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It should be noted that some of us with MG are “seronegative”—negative on the various blood tests. I was diagnosed ten years ago with a tensilon test. I take Mestinon and use glasses with prism to deal with the double vision.

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@patmet

It should be noted that some of us with MG are “seronegative”—negative on the various blood tests. I was diagnosed ten years ago with a tensilon test. I take Mestinon and use glasses with prism to deal with the double vision.

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That’s really interesting. I didn’t know blood tests didn’t always show MG. Oddly enough my blood still indicates that I have MG, but I now have no symptoms.

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@ess77

@agirlthing1977, @nedradenise, @aspine, and all…I've had double vision for many years, maybe 20-25…It's no fun and seems to get worse when I'm tired, upset, or have dry eyes are worse. Then, there are times it goes away. I find if I close one eye, usually the left since it's easier to close, I see fine but for a bit off for peripheral vision. Watching a movie or TV is really fun! At night watching tv I often cover one eye.

I was misdiagnosed several years ago with MG. Mis-diagnosed. I don't have it. There are several other reasons for double vision. I visit Mayo Florida and they think it's more of a muscular issue. It can be corrected by special lenses in glasses if it gets bad enough. Mine is worse recently, so may look into the glasses again. We'll see.

But, most importantly to me, you mentioned your bloodwork is good and it appears the double vision is the only symptom. Do you have other physical symptoms causing you problems? Also, what does the doctor say about the prednisone not helping? I'm surprised you are on prednisone with just double vision symptoms. Steroids are strong meds and while they saved my life when I had Sarcoidosis years ago and now off and on as needed for bronchitis or other issues, they can take a toll on the body in other ways. Aside from weight gain and bone issues, it changes your body-I began to look permanently pregnant due to the prednisone enlargement of my belly. I've recently lost about 35 pounds but still and always will have an enlarged belly. I get a moon face every time I take prednisone, have had unwanted hair growth on my face and arms, and other issues. So, while it can be a life safer, be aware of the possibilities associated with taking it.

Also, why does your doctor diagnose MG? Are you seeing a rheumatologist? neurologist? I think it's very important to do a lot of research, be your own advocate to find answers, to find the right answers…Fight for knowledge and then go forward to improve your health. It's a journey that can be dificult, challenging, and productive. I'm healthier now than I've been in many years…still have the same illnesses, but am dealing with them differently and have excellent doctors working with me.

Be well. Be better. Be blessed. Elizabeth

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Thank you Elizabeth so glad to hear that your doing well. I think I’ve gone to every dr I know yes I’ve seen neurologist, RA , muscle dr. There’s one dr that said once I was cleared from all my test to go back and see him to see if it could be corrected with glasses. My neuropathy dr said since the steroids didn’t work wants to see if plasma infusion may work. I’m worried & don’t think I wanna go that route caused other health issues. Blood clots possible stroke. So yea I think I’m gonna do my own research I’m just extremely tired & stressed out. I feel that it gets worse when I stress out (which is very often ) lol I’m gonna go back to see eye dr to see about glasses. Im glad I found this site because it reassures me im not the only one I might just start using a patch. Thank you so much for all your details as for me I’ll be praying you 🙏🏼

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@aspine

Autoimmune diseases are so difficult to diagnose sometimes. You don't mention what your other symptoms might have been other than the double vision. Double vision turns up in other diseases. Prednisone is no picnic either. What is it supposed to be doing for you? Did they do any bloodwork? Do you have signs of inflammation in your bloodwork?

Jump to this post

A variety of medicines can be a common cause of Binocular Diplopia. I was prescribed Alphagan P for increased interocular pressure. (I do not have glaucoma, and hope to prevent it.) After using those eye drops a few months I suddenly began seeing double. According to Mayo Clinic, Alphagan P “commonly causes” double vision. After reading that, I immediately stopped taking it. Seeing double was frightening! Then I noticed gradual improvement. What a relief when it finally resolved after 3-4 months!

One of my Opthalmologists, a retina specialist aged 70, informed me that after taking a doubled amount of Flomax he got double vision.

Suggest researching online to determine whether any of your meds may be a cause. Interestingly, my prescribing Opthamologist refuses to accept the the eye drops he prescribed may have caused double vision. Wishing you, and your eyes well, and hoping you will continue feeling uplifted by seeing beauty in your daily vistas.

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@agirlthing1977

Thank you Elizabeth so glad to hear that your doing well. I think I’ve gone to every dr I know yes I’ve seen neurologist, RA , muscle dr. There’s one dr that said once I was cleared from all my test to go back and see him to see if it could be corrected with glasses. My neuropathy dr said since the steroids didn’t work wants to see if plasma infusion may work. I’m worried & don’t think I wanna go that route caused other health issues. Blood clots possible stroke. So yea I think I’m gonna do my own research I’m just extremely tired & stressed out. I feel that it gets worse when I stress out (which is very often ) lol I’m gonna go back to see eye dr to see about glasses. Im glad I found this site because it reassures me im not the only one I might just start using a patch. Thank you so much for all your details as for me I’ll be praying you 🙏🏼

Jump to this post

@agirlthing1977 and all…I had a couple of plasma infusions when I was in the hospital for MG symptoms. Even though I didn't have MG, the infusions helped me feel better, have more energy, have easier movement, and have less pain. I had a nerve conduction test at Mayo that showed I didn't have MG and the Mayo ophthalmologists say the same thing, although I do occasionally have some Sarcoid eye problems. But, as the double vision increases, if it does and it appears it is, I'm heading toward a prism lens in my glasses. @patmet, how are you doing with the prism glasses? Are they heavy? Do they just look thicker than normal? I'm getting close to needing them most of the time. My eyesight is worsening, too.

Another thing I've found, my eyelids are quite droopy. This happens with age normally, but mine got so droopy I was seeing through little slits at times. I had eye surgery at Mayo to take out some of the lid tissue…guess you might call it like an eye job in plastic surgery, as it did a great job opening up the eyes and reducing the wrinkles. But, I don't have many wrinkles since using some magic creams/lotions. My lids are drooping again, so I'm close to needing the surgery again. There are specific parameters for surgery, which I meet easily.

I saw advertised on tv a new eyedrop that opens the eyelids and makes you look younger. I asked my surgeon if this drop would help me see better. Yes. She tested it and prescribed it for me. No insurance coverage, but I only use it when I need to see for driving or a day at the docs or out. I love the drops. They may one day be available to help some of us see better and paid for by insurance. They do help some with double vision for me. Doesn't resolve it, but can help.

Hope you get the medical help you need and find peace and comfort. Elizabeth

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I haven’t gotten prism glasses yet.Dr said once I was cleared from all my test to go back to see if it can be corrected with glasses I’m hoping he’ll be able to help me . Thank you for sharing your information it’s really helpful. Hope your doing well

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@ess77

@agirlthing1977 and all…I had a couple of plasma infusions when I was in the hospital for MG symptoms. Even though I didn't have MG, the infusions helped me feel better, have more energy, have easier movement, and have less pain. I had a nerve conduction test at Mayo that showed I didn't have MG and the Mayo ophthalmologists say the same thing, although I do occasionally have some Sarcoid eye problems. But, as the double vision increases, if it does and it appears it is, I'm heading toward a prism lens in my glasses. @patmet, how are you doing with the prism glasses? Are they heavy? Do they just look thicker than normal? I'm getting close to needing them most of the time. My eyesight is worsening, too.

Another thing I've found, my eyelids are quite droopy. This happens with age normally, but mine got so droopy I was seeing through little slits at times. I had eye surgery at Mayo to take out some of the lid tissue…guess you might call it like an eye job in plastic surgery, as it did a great job opening up the eyes and reducing the wrinkles. But, I don't have many wrinkles since using some magic creams/lotions. My lids are drooping again, so I'm close to needing the surgery again. There are specific parameters for surgery, which I meet easily.

I saw advertised on tv a new eyedrop that opens the eyelids and makes you look younger. I asked my surgeon if this drop would help me see better. Yes. She tested it and prescribed it for me. No insurance coverage, but I only use it when I need to see for driving or a day at the docs or out. I love the drops. They may one day be available to help some of us see better and paid for by insurance. They do help some with double vision for me. Doesn't resolve it, but can help.

Hope you get the medical help you need and find peace and comfort. Elizabeth

Jump to this post

@ess77
I’m so sorry for all the problems you have had to deal with! Maybe it would be worth getting a second opinion? Have they done all the blood tests for MG? Some people are negative for AChR, but positive for MuSK or LRP4; some like me are negative on all of the blood tests (seronegative). I was diagnosed with MG based on a Tensilon test and a repetitive nerve stimulation (RNS) test. My neurologist also gave me a trial of Mestinon to see if that would help—it helped with feeling like my legs were heavy and did help with my hip pain, but it only helped a bit with my double vision and eyelid droop. I did go to Stanford for a consultation, but they dismissed many of my symptoms since I am seronegative. I did not feel that they listened to me. Getting prism in my glasses also helped my vision issues and is what has enabled me to continue computer work. As I understand it, they put prism in one lens but not the other to help my eyes align. My lenses are not glass (polycarbonate?) which helps with the weight. I also choose relatively lightweight frames, so I don’t feel like my glasses are heavy. My prescription otherwise mainly corrects for presbyopia so the lenses aren’t too this, although one is thicker than the other. I would encourage you to get a second opinion and maybe get retested for MG before undergoing eyelid surgery again.

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