Worsening diplopia with no explanation

Posted by beka @beka, Mar 11, 2019

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?

REPLY

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!

REPLY
@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?

Jump to this post

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".

REPLY
@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!

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY

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

REPLY

@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.

REPLY

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.

REPLY

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.

REPLY

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

REPLY
Please login or register to post a reply.