Worsening diplopia with no explanation

Posted by beka @beka, Mon, Mar 11 2:59pm

Hi! I’m new here. My name is Beka. I’m 43 years old, and I live near Atlanta Georgia. I’ve cross-posted this since we’re still not sure what’s going on.

My journey started 20 years ago when I was diagnosed with Crohn’s. That and a couple of other little things like psoriasis and migraines. (It’s still weird to lump Crohn’s and migraines in as “little” things.)

However, in the last 5 years, I’ve had a cascade of issues that has led to a laundry list of diagnoses that are autoimmune or related conditions. Among these are Rheumatoid Arthritis, Reynaud’s, CFIDS, Fibromyalgia, etc. Many of my issues are still unexplained. One of the most annoying, concerning to me is, in a nutshell, bilateral monocular vertical diplopia. That is, double vision where the ghost images are above and below the actual thing, it’s still present when one eye is closed, and both eyes are affected. This problem is getting worse as time goes by.

I’ve seen several ophthalmologists, a neuro-ophthalmologist, and a retina specialist since I am taking Plaquenil for my RA. The Plaquenil use was ruled out as the issue. The only thing (that I am aware of) that they were not able to rule out was another autoimmune disease.

Several of my doctors have expressed concerns about MS, but 3 brain MRIs in the last 5 years have not shown any lesions. Myasthenia Gravis is another potential, but my primary is unable to order the antibody tests, and I fired my rheumatologist for being a total jerk. I am in the process of finding a new one, but it’s difficult to find a doctor that is willing to take input from the patient or another doctor (in my experience).

So, to stop my post from getting any longer, has anyone experienced this type of diplopia? Or does anyone have MG with ocular problems that sounds like this? Are there any other conditions that should be considered?

Any help would be greatly appreciated.

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?

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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!

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@ethanmcconkey

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?

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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".

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@shellyleon_dd

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!

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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.

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@beka

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.

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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.

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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

Liked by TERESA LOGAN

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@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.

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