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

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

@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.

Hello and @agirlthing1977 sure hope corrective lenses can help you. I had dry eyes for about 15 or more years and tried every drop they sold; currently on Hylo but starting to sting. Then 2018 was diagnosed with narrow angle glaucoma. The eyedrops for that I have used since every night are Latanoprost - the Monoprost version as it doesn't contain preservative and comes in a nightly little plastic container, one dose. It makes skin around eyes go dark and other side effects, as most drops do have side effects.
I think it was into a year of use when woke up one night and in dim light saw double dresser, double clock etc. - went to emerge but where I live only saw a GP who took eye pressure. I was asked if both eyes and I didn't recall; also if the double vision was horizontal or vertical and I think a bit of both... this continues to now and happens once in a while esp. if I turn my head in bed to see alarm clock/double - no explanation. Then 2020 had iridotomy laser each eye to relieve future pressure in eyes and after that one morning saw two of spouse coming up the stairs... whoa! Since then, if I am looking at on object in front of me, the objets in background are double - and if I look across the room at an object it is single but the object in front of me is then double (reverse) and I have been told it's old age... I am 78. Third type of double vision for me is if been on ipad a lot in a day reading/searching then switch to a book or titles on tv, they have sort of are double but more a shadow underneath or above each letter... moving face up and down or shifting eyeglasses makes no difference. So three other types of double vision and occur on and off... so reading others comments I am thankful the rest of the time my vision is pretty good with specs - but it sounds scary and to live with it all the time must get you down, plus strong medications....
Not as serious but for last year or so also I wake up through night and whole bedroom room is foggy; or just my lit ipad, clock and phone are foggy... it comes and goes and I panic as wonder if one day it will stay foggy - couple of times after afternoon nap woke to foggy room too lasting about 15 minutes... have no idea why... so hope am not intruding on discussion about other type of double vision - hopefully one day in the future they can find answers to everyone's vision problems and wishing everyone who has any eye issues can get the help they need 🙏

I would love to give a ‘shout out’ to everyone who has jumped in to try to help @agirlthing1977 . All of you are a perfect example of what Mayo Clinic Connect can do and what it does for those needing help. Thank you.
@agirlthing1977, I’m sorry you’re having trouble getting a diagnosis and treatment for your autoimmune disease. Unfortunately, it can take years, but i think you’re on the right path. It’s important that you continue to advocate for yourself and find doctors that are willing to work with you.
Are you going to a large medical center or university hospital? Mayo Clinic also has hospitals within their care network. The link is Mayo Clinic Care Network - About Us - Mayo Clinic
I’m glad you found this site! Will you continue connecting with us and tell us what you learn?

I’ve been trying to edit the above comment but i was too late! The correct link for the Mayo Clinic care network is:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Hi, nedradenise, Well, it sounds like your rheumy is trying to do the right thing for you. It doesn't get much better than a Mayo Clinic!! And it's good to be having the colonoscopy. You will be in my thoughts. Good luck to you.

So you were diagnosed with MG. Have you looked up the symptoms of MG? Do they match what you are going through? You really must do some research. I recommend reading ess77's response to you. Good advice, and good questions. I've been diagnosed with polymyalgia rheumatica. Before the diagnosis, I never heard of it. But now, even though I"m "mostly" convinced that's what I have, I do research every single day. You can never know too much. Because frankly, the doctor's don't know enough! You have to be a part of the team trying to help you. I'll be watching for updates. Good luck

I totally understand what you are going through. It’s no fun at all I pray that you are able to ge through this. Yes hopefully one day they will find a cure of all of this. I will be praying for you 🙏🏼

Yes of course I will definitely keep y’all up dated . Thank you so much .🙏🏼

Sorry for your troubles. I don't know what caused your original double,,,but high doses of Prednisone caused mine. Ophthalmologist found a 'wrinkle' on the back of my eye. Daily wetting drops help sometimes. My double is up and down, not side to side. It seems there's a difference. Prednisone is a drug you can't live with and can't live without. I am weaned down to 2mgs but doc says zi'll never be off of it. The high doses ruin your adrenal glands. Weight goes away somewhere less then 20 MJS -for me. Best of everything to you.