Worsening diplopia with no explanation

Hi @beka those symptoms must be so frustrating.

I wanted to introduce you to fellow Connect member @sarcomasurvivor who has experience with diplopia and also to Connect member @user_chdb5e8ac who has experience with ocular myasthenia gravis as they may be able to provide support for you.

I also think you may find this thread on myasthenia gravis interesting https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Back to you @beka, have your doctors prescribed any treatment at this time or are they looking for the cause first?

Definitely talk to a neurologist about Myasthenia Gravis (MG). That’s where all my issues started-double vision and extreme extremity weakness when I was 17: after the birth of my first child (28), I was diagnosed with Sjogrens Syndrome and had major flare ups after the birth of my next two children. Then at 47 while going thru menopause I was diagnosed with Lupus and RA: I went into acute kidney failure (stage 3, almost 4) at 49. It’s been a rough road but find a good doctor to help you manage it all. The Mayo is fabulous if you can go there! I’ve noticed that a lot of my issues revolved around times in my life where I had hormonal changes. I hope you find answers! God bless!

Thank you @ethanmcconkey I greatly appreciate it. And I will definitely check out that thread.
None of my doctors have prescribed any treatment for this since they can't find why it's happening. I had one that at least assured me it was real and not in my head, which is awesome because women are often told it's all in their head. But I'm getting what I call "the big shrug".

Thank you @shellyleon_dd. What kind of double vision did you have? Was it like mine? I had also noticed that my issues, while milder in the beginning, go back to right after my twins were born. And while I was pregnant, my Crohn's was off-the-chart, crawl-in-the-corner-and-die kind of flaring. Do you mind me asking, did they find a cause for your kidney failure? I was in the hospital before the worst began with kidney failure, but they could never explain why it happened. I live in fear now, but my labs all say my kidneys are better now.

Hi @beka i am happy to help and answer any questions! I believe my double vision was different, although it’s been about 30 years since I had that symptom. It was side by side and I think it went away when I closed one eye. The acute kidney failure came out of nowhere and it was diagnosed as lupus nephritis; glomerulonephritis. I’ve been on cell cept, prednisone, and plaquneil since and am doing much, much better, although my labs have been up and down over the past year.

HI @beka ITS SO GOOD TO FIND SOMEONE WHO IS EXPERIENCING THE DOUBLE VISION MINE IS SIDE BY SIDE AND CLOSING ONE EYE 👁 IT GOES AWAY I CAN RELATE TO YOUR EMAIL THANKS 🙏 TERESA

@quiteachiver75 MANY OF THE THINGS YOU MENTIONED I HAVE DOUBLE VISION AND HAVE TO CLOSE ONE EYE. I HAVE BEEN TOLD IT IS A SIDE AFFECT FROM GRAVES DISEASE THYROID.

Beka, I've have/had Crohns / Ulcerative Colitis for decades. It all started when I went to have my 4 wisdom teeth out. I was about 20 years old
at the time. After the surgery, they gave me antibiotics. I came down with Crohns/UC right then and there. After about 20 years, I had to get my
large colon taken out as it was getting pre-cancerous. I also found out I didn't have a spleen. It appears I wasn't born with one. So, sans speen
may have some effect on my immune system. On top of that, I've got a rare form of late onset muscular dystrophy. It's only effecting my hands,
legs, and feet. I've had a DNA test to confirm it, and they have some experimental therapies being developed for it. But, most recently, I've
experienced the same poly vision you seem to be having. I have 'normal' double vision with extra ghosting images above. This occurs in both eyes, and/or with either eye shut. Only closing both eyes does it go away (grin). This has been going on for about the last 2 years now. The only other medical problem I've had around the time of the poly vision starting, was an upper sinus infection, which I've never had before. We had to bug out for a hurricane, and I was stuck in a wet hotel room with no electricity for a few days. There was a moldy smell after a day or so. I had to get my ears poked and stents put in twice to equalize the pressure, as my Eustachian tubes were blocked. I've been to the eye doctor and they want to do cataract surgery. I'll be doing that soon, but, don't think that it will be resolved. I've had the first MG (Myasthenia Gravis) blood test with no indication of MG, but there is a 2nd test and some more biomarkers, to check out. There is also another disease called Sjogrens, which is an auto immune disease, that in one rare instance had double vision. I'm considering asking about that as I'm getting dry eyes and mouth, which is the main symptom of Sjogrens. The eye doctors are puzzled about my poly vision as it doesn't fit into any of their 'normal' double vision categories. I haven't seen a neuro-ophthalmologist yet.

Beka, I forgot to ask. Has any of your eye doctors tried 'prism' glasses for your double/poly vision correction?
I was at an MG group, and borrowed a couple of other patients glasses for a moment to try on and they sharpened things up for me.
At the doctors office they tried a couple prism lenses on me, but, they didn't seem to work as well. After my cataract surgery, they
may try some more, assuming the cataract surgery doesn't help with my double/poly vision.

I have double vision too and had both my cataracts taken out and last week went for my prescription but they didn't say anything about prism glasses. I just ordered a pair for distance, but not prism. I don't know why they didn't tell me to get prism. I still have double vision