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

Posted by agirlthing1977 @agirlthing1977, Aug 8, 2022

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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I also have double vision as a complication from covid Oct 2020. I see a neuro-opthalmologist, and the treatment plan for me is vision therapy and prism glasses. Try seeing a neuro-opthalmologist.

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@louiseg

I also have double vision as a complication from covid Oct 2020. I see a neuro-opthalmologist, and the treatment plan for me is vision therapy and prism glasses. Try seeing a neuro-opthalmologist.

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Great suggestion, @louiseg. How did you know to consult a neuro-opthalmologist? Were you referred?

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I am a little surprised if your problem is MG that your symptoms remain the same. One thing I have learned about MG is that if you have it now, you may not in a short time or if you don't have it now you might soon. In other words, it keeps changing, i.e. for me. I started with Ocular MG. One side of my face would not smile, then I could not chew adequately so went to baby food, then had Ptosis, eyelid surgery, double vision, and continued to get worse so 8 days in ICU in 2019 with IVIG and my symptoms were gone. However, in a couple of months I developed Peripheral Neuropathy which I still have (lack of balance) and my MG is now generalized, not ocular. I believe all was caused by lack of B12 absorption since my Intrinsic Factor is negative. Mention other symptoms you have. Are you anemic? Check your blood work. And, get the opinion of other Neurologists. I don't think most doctors that are not Neurologist have enough knowledge of MG. Just my thoughts.

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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

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@ess77
Hi, thanks for your post. Can I ask what the new eyedrop is you are taking that opens the eyelids and helps you see better?

Thanks!

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@bustrbrwn22

@ess77
Hi, thanks for your post. Can I ask what the new eyedrop is you are taking that opens the eyelids and helps you see better?

Thanks!

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@busterbrwn22 and all...It does work nicely. My eyes open much better and my sight is improved, clarity, range, and such. The double vision is still there, but less and less I can see through it or control it better.

Upneeq is the name. You can only get it from one pharmacy/company-RVL Pharmaceuticals, the manufacturer I suppose. It was $150 for a 30-day supply. I only ordered one time so far. Time to order again now. I will probably get prism glasses in the new year. Since wearing glasses from the young age of 7-8 I was thrilled to wake up and see clearly after cataract surgery several years ago. I still love not wearing glasses all the time. But, as the vision is decreasing, I'm running out of options. So, we'll cross that step when necessary, not today.

Hope all are doing well. I'm holding onto the improvements so far. Resting today after several days of higher activity. My poor watch is going crazy with my lack of steps today! It keeps reminding me to move...so I get up for some water or a snack...not quite what the poor watch has in mind...Tough. I now know and understand and really put into motion the 'rest as needed' philosophy. And, my life is greatly improved. I do recommend we all listen and hear our body telling us what it needs. It knows.

Enjoy the drops if you try them. Be well and be blessed. elizabeth

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@raye

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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Hello, @raye. It's about 1 year later -- Hope you are well.

Flomax? Is that the nasal decongestant? I'll look that up. i have been using it the week of diplopia.

I also began having double toward the end of my day which is actually @6 am. I'm a chronic insomniac, though if I take enough drugs I can sleep all day long. After which I can barely walk. My balance is bad to begin with, I have Multiple Sclerosis and bad balance is one of my major problem.

Steroids, yes, can help, but too many oral steroids is bad for your vision. A friend with MS almost lost his vision completely because a new doctor was feeding him oral steroids. IV Methyl prednisone is better, once a week (not entirely sure about that) for a few weeks...

I only have double vision when I take off my glasses to write and read. I'm seriously myopic. Now that they've invented thin lenses my glasses look normal but when I was growing up they were brick-thick. Thinned lenses, sunglass-shaded, don't know how prism lenses could be added to all that...will look that up too.

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@raye. Your message came thru totally garbled. Can you resend it?

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i threw out my flomax, decongestant just in case anyway. can see why it might be problematic re tgn

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@ekelks

Hello, @raye. It's about 1 year later -- Hope you are well.

Flomax? Is that the nasal decongestant? I'll look that up. i have been using it the week of diplopia.

I also began having double toward the end of my day which is actually @6 am. I'm a chronic insomniac, though if I take enough drugs I can sleep all day long. After which I can barely walk. My balance is bad to begin with, I have Multiple Sclerosis and bad balance is one of my major problem.

Steroids, yes, can help, but too many oral steroids is bad for your vision. A friend with MS almost lost his vision completely because a new doctor was feeding him oral steroids. IV Methyl prednisone is better, once a week (not entirely sure about that) for a few weeks...

I only have double vision when I take off my glasses to write and read. I'm seriously myopic. Now that they've invented thin lenses my glasses look normal but when I was growing up they were brick-thick. Thinned lenses, sunglass-shaded, don't know how prism lenses could be added to all that...will look that up too.

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@ekelks Am i understanding correctly-you’ve had double vision for 2 years? Does your doctor say what the cause is? I only had it for 2-3 months when I first was diagnosed with an autoimmune disease. He mentioned prism glasses, but we never had to try using them. Has your doctor talked about using these?
You grew up wearing glasses? Me, too! When glasses weren’t cute, either!
You mentioned that your day ends at 0600! Are you a nurse?

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hi, no, not a nurse, just like staying up late, nice and quiet. yet to see md about this. this week will be seeing gp, next week neurologist, week after ophthalmologist.

someone will figure it out, i hope.

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