1. < Autoimmune Diseases

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

avmcbellar | @avmcbellar | Dec 13, 2020
In reply to @pmrpainat60 "Hi all, I'm new to this sight noticed these are older postings, but maybe it will..." + (show)
@pmrpainat60

Hi all,
I'm new to this sight noticed these are older postings, but maybe it will help others ?
About 8 yrs ago, I woke one morning with vertigo, maybe two weeks after noticed the first sign of double vision. I've seen all the appropriate doctors and was diagnosed with vertical visual diplopia.
One eye closed or not I see double. Over the yrs my vertical diplopia has morphed, I never know what variations I'm gonna be in for. Sometimes its Horizontal like 3 and 9 o'clock, sometimes its say at 2 and 8, and others. (5 n 7 look like upside down Micky mouse ears).
For the most part I've grown use to it.
BTW My Mother had the same vision problem, she was fifty when her vision changed, mine changed at 52 but they say its not hereditary? maybe its environmental? or autoimmune?
I was unaware of vision therapy, will defiantly look into it. After Covid.

In the last 5 months I've been diagnosed with PMR an autoimmune disorder, I wonder if its not all connected in someway, but the Doctors say no?
Absolutely the last place I want to be is in a doctors office, considering the Covid virus. But the pain was so intense, really had no choice. So three Doctors later, I'm on prednisone for the pain, I have no idea what the side affects are gonna be considering, my vision as it is?

Donna

Jump to this post

Hi Donna @pmrpainat60 I would also like to welcome you to the Mayo Clinic Connect. It is a place where we can all learn from each others experiences. Sorry to hear of your annoying diplopia. In order to find a remedy for your diplopia I feel it would be helpful to find the cause. Have you considered Graves disease? There could be many causes. My diplopia is the result of a cerebral aneurysm. A friend of mine living in Pennsylvania had diplopia after suffering a concussion as a result of a fall. She later suggested vision therapy to me. I live in central Florida. The closest office to me was 40-45 minutes away so I decided not to pursue it. How can anyone with vision disturbances travel to an office, right? Well, it worked out well for my friend. After several weeks the eye exercises help to eliminate her diplopia. When I got the exciting news from her I decided to call the vision therapist near me just to learn more about it. I was told that I would firstly need to come into the office for an assessment which may take upto 3 hours to complete. The results of the exam will conclude if eye exercises will offer help. If exercises can help, a treatment plan will be determined and the length is dependent upon the need to meet those goals. A twice a week office visit may be difficult for me. Anyways, I was also told most medical insurances do not accept this treatment. In my friend’s case she paid for the services herself. I am glad her treatment gave positive results. Originally she had placed a prism in her eye glasses for help. After completing her eye exercises she had her prism removed. Hope this helps. Wish you well. Toni

REPLY
pmrpainat60 | @pmrpainat60 | Dec 13, 2020

Hi John,
I'm aware of GCA and scared for sure, I have had nightmares about it. But I must confess I've been a bit stubborn with my New Rheumatologist, I insisted on 5mg and Advil, I do not want to be on 20mg scared of the side effects. So 5mg so far is kind of doable with the Advil, but unfortunately I've had to slow down a lot due to some lingering pain. I'm still trying to wrap my head around this thing/disease.
I'm looking forward to the references and suggestions you included.
Thank you for getting back to me so soon,
Donna

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MGMolly | @Erinmfs | Dec 14, 2020

I have diplopia constantly, it is always on the left side. It comes and goes, worsening and getting better, but never goes away. I have Myasthenia Gravis, MuSK kind. I see a Mayo neuro opthamologist. I suggest seeing a Mayo neuro opthamologist while your diplopia is at it's worst, that's when my MuSK antiobody test came back positive. I'm sorry to hear of your other ailments, MG is my worst neurological disease.

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MGMolly | @Erinmfs | Dec 23, 2020

Hi,

I was just telling someone of my diplopia issues and thought I'd share my situation here on Connect. I see like this, that double wine glass, with my left eye.. I gave up driving. I'm so frustrated with my vision today!

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1 reply
ashby1947 | @ashby1947 | Dec 24, 2020

Hi MGMolly - I am truly sorry that you are dealing with diplopia. I've had it for 2 years as a result of tube shunt surgery for glaucoma - a muscle got cinched somehow. Does yours affect your whole range of vision? Mine is only from chest high down, but plenty enough to disorient me and affect my confidence and independence. I believe the diplopia has had the most profound effect on my over-all well being. I assume yours is a result of the MG, and as you mentioned, it is better or worse depending upon how the MG is doing. Well, it is an untenable situation, and I can share some of what you are going through. My prayers and thoughts are going to you for some relief or improvement, or at least some peace. I hope today is a good day! Sue

REPLY
1 reply
MGMolly | @Erinmfs | Dec 24, 2020
In reply to @ashby1947 "Hi MGMolly - I am truly sorry that you are dealing with diplopia. I've had it..." + (show)
@ashby1947

Hi MGMolly - I am truly sorry that you are dealing with diplopia. I've had it for 2 years as a result of tube shunt surgery for glaucoma - a muscle got cinched somehow. Does yours affect your whole range of vision? Mine is only from chest high down, but plenty enough to disorient me and affect my confidence and independence. I believe the diplopia has had the most profound effect on my over-all well being. I assume yours is a result of the MG, and as you mentioned, it is better or worse depending upon how the MG is doing. Well, it is an untenable situation, and I can share some of what you are going through. My prayers and thoughts are going to you for some relief or improvement, or at least some peace. I hope today is a good day! Sue

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oh thank you, you have brightened my day. my diploia ebbs and flows. Sometimes it really flares, sometimes my right eye droops shut completely. My diplopia really flared in November, but it has improved slightly. Thank you, you have said all the right things today! I don't know what glaucoma is like, I'm sorry to hear that you are dealing with that.

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1 reply
ashby1947 | @ashby1947 | Dec 24, 2020
In reply to @Erinmfs "oh thank you, you have brightened my day. my diploia ebbs and flows. Sometimes it really..." + (show)
@Erinmfs

oh thank you, you have brightened my day. my diploia ebbs and flows. Sometimes it really flares, sometimes my right eye droops shut completely. My diplopia really flared in November, but it has improved slightly. Thank you, you have said all the right things today! I don't know what glaucoma is like, I'm sorry to hear that you are dealing with that.

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Wouldn't it be fun to sit down and have that glass of wine together?!!! Between the two of us, we could probably figure out which glass is real - LOL!!!

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ess77 - Elizabeth | @ess77 | Dec 24, 2020

I'd like to join ashby1947 and Erinmfs for that glass of wine, or two or how many we see. Sure makes life interessting, eh? I never know when the dilopia will appear. I think it's worse when I'm tired, definitely when I get up too early and my body isn't ready to start the effort or moving around. Those early Mayo appts are tough for me. Kills the entire day, exhausted to a point of almost unable to function. And, takes a day or two to recoup. I was diagnosed with MG years ago, after that neurologist decided I didn't have MS. I had several IV treatments that did help, but then testing didn't support the diagnosis. So, back he went to MS. The sight issues have never been accurately diagnosed. I see the Mayo neuro opthomologis in 2 weeks....can't wait as I'm really praying for some answers. and some suggestions for help. I drive ok, but if I begin to see double, blurred and whatever, it does help to close one eye, usually the left as it's easier to keep closed while driving. I don't start out with the problems, tho. I'll not drive not seeing well, but if it hits while driving......Sue, I think you mentioned you have some glasses that help? I expect to go that route if he recommends. These sight problems tire me physically. It's work to see and very frustrating, isn't it? BTW: MGMolly, for several years I couldn't see well with either eye because my lids were drooping so badly. There were time last year I was looking through little slits to see. What a hoot that was! If that's part of your problem, here was my solution. Mayo Opthomology Surgeon tightened the lid muscles so they actually work properly, I can open my eyes all the way and they weill stay open. Makes a big diff in ability to see! Ck it out. It was easy, simple surgery, worked perfectly, took several weeks to heal completely, and I had to pay a portion of the cost since it can be beneficial as plastic surgery. Yes, I see....AND I have no loose skin or wrinkles....looks good, as a side effect. I'll let you know what the tests show in couple weeks. Merry Christmas to all and special Christmas blessings. Elzabeth

REPLY
1 reply
MGMolly | @Erinmfs | Dec 25, 2020
In reply to @ess77 "I'd like to join ashby1947 and Erinmfs for that glass of wine, or two or how..." + (show)
@ess77

I'd like to join ashby1947 and Erinmfs for that glass of wine, or two or how many we see. Sure makes life interessting, eh? I never know when the dilopia will appear. I think it's worse when I'm tired, definitely when I get up too early and my body isn't ready to start the effort or moving around. Those early Mayo appts are tough for me. Kills the entire day, exhausted to a point of almost unable to function. And, takes a day or two to recoup. I was diagnosed with MG years ago, after that neurologist decided I didn't have MS. I had several IV treatments that did help, but then testing didn't support the diagnosis. So, back he went to MS. The sight issues have never been accurately diagnosed. I see the Mayo neuro opthomologis in 2 weeks....can't wait as I'm really praying for some answers. and some suggestions for help. I drive ok, but if I begin to see double, blurred and whatever, it does help to close one eye, usually the left as it's easier to keep closed while driving. I don't start out with the problems, tho. I'll not drive not seeing well, but if it hits while driving......Sue, I think you mentioned you have some glasses that help? I expect to go that route if he recommends. These sight problems tire me physically. It's work to see and very frustrating, isn't it? BTW: MGMolly, for several years I couldn't see well with either eye because my lids were drooping so badly. There were time last year I was looking through little slits to see. What a hoot that was! If that's part of your problem, here was my solution. Mayo Opthomology Surgeon tightened the lid muscles so they actually work properly, I can open my eyes all the way and they weill stay open. Makes a big diff in ability to see! Ck it out. It was easy, simple surgery, worked perfectly, took several weeks to heal completely, and I had to pay a portion of the cost since it can be beneficial as plastic surgery. Yes, I see....AND I have no loose skin or wrinkles....looks good, as a side effect. I'll let you know what the tests show in couple weeks. Merry Christmas to all and special Christmas blessings. Elzabeth

Jump to this post

hey, thank you for sharing, a fellow MG here on Christmas! I had a minor car incident, I gave up driving. I tried the 'one eye'd driving, but it scared me. I just suck it up and call and uber. Let's get together and have a glass of wine this week, we can count and figure out how many we actually have! 🙂 I always get 2 for the price of one, like in that photo, that's how I see on the left-hand side.

REPLY
1 reply
avmcbellar | @avmcbellar | Dec 25, 2020
In reply to @Erinmfs "Hi, I was just telling someone of my diplopia issues and thought I'd share my situation..." + (show)
@Erinmfs

Hi,

I was just telling someone of my diplopia issues and thought I'd share my situation here on Connect. I see like this, that double wine glass, with my left eye.. I gave up driving. I'm so frustrated with my vision today!

Jump to this post

Hi @Erinmfs I have diplopia but a prism does not offer help for me. It should help you if your diplopia is the image in your photo. Best wishes. Toni

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