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.

Erika | @erikas | Nov 9, 2020

@dinoman I know you have been a member for a little awhile but I wanted to welcome you to Mayo Clinic Connect properly. You mentioned that a side effect of the blood pressure medication you were taking was double vision. I assume you are no longer taking the medication. I'm wondering if your vision improved since titrating off the medication and what your provider's thoughts are regarding the correlation?

REPLY
1 reply
dinoman | @dinoman | Nov 10, 2020
In reply to @erikas "@dinoman I know you have been a member for a little awhile but I wanted to..." + (show)
@erikas

@dinoman I know you have been a member for a little awhile but I wanted to welcome you to Mayo Clinic Connect properly. You mentioned that a side effect of the blood pressure medication you were taking was double vision. I assume you are no longer taking the medication. I'm wondering if your vision improved since titrating off the medication and what your provider's thoughts are regarding the correlation?

Jump to this post

No improvement in double vision since going off of medication. I"m getting cataract surgery on both eyes in the coming month. So, I'll see if the double (really poly vision .. I'm seeing 4 images now, two side by side and two above them a bit lighter in intensity) Both eyes are affected, so I"m thinking this might be more muscle related than lens related, but, by the end of the year, I'll be able to 'see' if it
is more lens or muscle related. My doctor really hasn't said anything but to stop the medication (Norvasc - a calcium channel blocker).
My muscle disease is a calcium activated chloride channel, so I was a bit questioning the use of Norvasc in my treatment.

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1 reply
Erika | @erikas | Nov 12, 2020
In reply to @dinoman "No improvement in double vision since going off of medication. I"m getting cataract surgery on both..." + (show)
@dinoman

No improvement in double vision since going off of medication. I"m getting cataract surgery on both eyes in the coming month. So, I'll see if the double (really poly vision .. I'm seeing 4 images now, two side by side and two above them a bit lighter in intensity) Both eyes are affected, so I"m thinking this might be more muscle related than lens related, but, by the end of the year, I'll be able to 'see' if it
is more lens or muscle related. My doctor really hasn't said anything but to stop the medication (Norvasc - a calcium channel blocker).
My muscle disease is a calcium activated chloride channel, so I was a bit questioning the use of Norvasc in my treatment.

Jump to this post

@dinoman That must be extremely uncomfortable to experience poly vision. Now that you have stopped taking Norvasc, hopefully your vision will improve. Will you give us an update at some point?

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1 reply
mstephen | @mstephen | Nov 13, 2020

I have some of the experience like the above comments. Confused about possible improvement??

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dinoman | @dinoman | Dec 4, 2020
In reply to @erikas "@dinoman That must be extremely uncomfortable to experience poly vision. Now that you have stopped taking..." + (show)
@erikas

@dinoman That must be extremely uncomfortable to experience poly vision. Now that you have stopped taking Norvasc, hopefully your vision will improve. Will you give us an update at some point?

Jump to this post

Erika, I just had cataract surgery on my 2nd eye. The double/poly vision seems to have vanished. Yippie!
It appears to have been cataracts in both of my eyes causing the poly vision. I'll be more convinced in a few
weeks when my eyes stabilize a bit more. I have noticed a slight double vision at night looking at lighted
signs, but, for now, I'm writing that off to my eye drops for the surgery etc. Richard

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Erika | @erikas | Dec 4, 2020

@dinoman The double/poly vision has vanished! You must be so relieved. I had no idea cataracts could cause double/poly vision. Will you give an update later on?

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dinoman | @dinoman | Dec 4, 2020

Erika, Cataracts usually only cause double vision in one eye or the other (Monocular double vision). When double vision occurs in both eyes, the thought usually goes to muscle related (Binocular double vision). It seems like I had Monocular double vision in both eyes. At least that's what I'm hoping for right now, unless the steroid, antibiotic or anti inflammatory eye drops are somehow curing my muscle related vision, which I doubt. Richard

REPLY
1 reply
Erika | @erikas | Dec 8, 2020
In reply to @dinoman "Erika, Cataracts usually only cause double vision in one eye or the other (Monocular double vision)...." + (show)
@dinoman

Erika, Cataracts usually only cause double vision in one eye or the other (Monocular double vision). When double vision occurs in both eyes, the thought usually goes to muscle related (Binocular double vision). It seems like I had Monocular double vision in both eyes. At least that's what I'm hoping for right now, unless the steroid, antibiotic or anti inflammatory eye drops are somehow curing my muscle related vision, which I doubt. Richard

Jump to this post

@dinoman Keep us posted!!

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pmrpainat60 | @pmrpainat60 | Dec 13, 2020

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

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | 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, Welcome to Mayo Clinic Connect. I don't have diplopia but I do have PMR which is currently in remission. When my PMR was active they were always questioning me about my symptoms to determine if I also had Giant Cell Arteritis which is interrelated with PMR and can affect vision. I did find an interesting article which may show a relationship with PMR.

An unusual case of diplopia - Asking the right questions leads to the correct diagnosis.
- https://www.ophthalmologymanagement.com/issues/2017/may/an-unusual-case-of-diplopia

The pain from PMR can be awful and I'm certainly glad mine is still in hiding and hope it never comes back. I'm not sure what dosage of prednisone your doctor/rheumatologist started you on for the PMR but for my two occurrences I was started on 20 mgs and was able to taper off in 3-1/2 years the first occurrence and 1-1/2 years the second time around which was about 3 years ago. I think it's not uncommon to have multiple autoimmune diseases. The worst side effect of prednisone for me was weight gain. The second time around I was aware of that side effect so was able to keep it to a minimum.

You may be interested in the following discussion related to PMR.
- Polymyalgia Rheumatica (PMR): Meet others & Share Your Story: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/

@avmcbellar and @ashby1947 may have some suggestions for you also.

Hopefully you won't be on prednisone long term. Did you get a chance to discuss the side effects of prednisone with your doctor?

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