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.

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.

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.