Double vision and PMR?

[krillemy]

I have in recent years become more and more bothered by double vision when I am tired/fatiged. Of course, it is worse during flare-up periods. Now it can be seen in photos of me, and my family has commented that I am becoming cross-eyed in the evening.

I mentioned it to the ophthalmologist at my last checkup, and she examined me and said that it must be the eye muscles getting tired. She also asked if I had Myasthenia Gravis. But I have been tested for that - so no. She said that it could not be GCA, as would have pain.

I have now discovered that the double vision is in both eyes. That is, even when I cover one eye! I was looking for the northern lights in the night sky and there were 2 moons. I then covered one eye and there were still two...

Does anyone else have this problem?

[winfong]

Might want to get that checked by a rheumatologist.

"If you have GCA you may have a headache on one side of your head. This may be different from other headaches. Some people have painful headaches when they chew. The most serious symptom is a change in your vision. You may have blurry vision, double vision, or blindness." (aafp.org)

[krillemy in reply to winfong]

Thank you - however I have a Rheumatologist who is not alarmed, and I have previously had blurred vision, but the Rheumies at the hospital do not think that I have GCA (never had raised CRP) and will not scan or take other action....

[PMRpro Ambassador in reply to krillemy]

Wonder how we get them to understand it simply isn't true? I know Snazzy says her markers including CRP were stubbornly normal even as she sat in the ED with her vision shutting down!!!

[krillemy in reply to PMRpro]

Hmmm... I think I need to try again to talk to the Rheumy. I read some old post now and as I read GCA does not always start with severe headache

[SnazzyD in reply to PMRpro]

Yep, ESR 16 CRP 4

[krillemy in reply to SnazzyD]

OK.. but did you have pain?

[SnazzyD in reply to krillemy]

Oh yes, until they gave me 60mg Pred my scalp felt like it had been dipped in acid. I was also getting jaw claudication when on chewing that day. There was tenderness if one pressed the temple on the right and less so on the left but my scalp was so uncomfortable that that wasn’t the main issue. 2 days before I noticed a slightly raised vein at the end of my eyebrow. During that week I was getting building, intermittent discomfort behind my ear which I put down to over use of a cordless phone and my usual neck tension. My pillow irritated my head, the March wind was extra cold on my right cheek and my glasses felt uncomfortable. Morning pain in the base of my skull like a tension headache was more persistent but gone by the time I had cycled 8 miles to work during which I got fleeting black spots when I was puffing over a rise. I never got double vision but others do. In the night for some months if I woke for the loo I had my right eye only seeing grey not black of the room and I got little sparks in my vision. These both cleared up in minutes. None of the symptoms were bad enough to see a doctor. On the evening before A&E my husband was watching the rugby and I couldn’t bear the sound of the crowd and felt a bit odd. I woke that night with my scalp really sore and a foggy head and sparkles after a dream where a voice said go and look at your garden because you won’t see it soon. Finally my brain kicked in and I remembered what I’d learned about red flag headaches in patients.

The point of that ramble is that that is my story and of a slow creep but others will have different ones and that is the confounding issue with GCA. People work from the list in guidelines but actually timescales and individual’s symptom patterns vary. My question to any doctor who dismisses GCA is if it’s not that then what is it? Double vision can be a sign of something else that warrants intervention sooner rather than later. I wouldn’t feel happy unless they made their decision based on proper investigations or gave me a solid rationale. The trouble is they are unlikely to have experienced it themselves.

[krillemy in reply to SnazzyD]

Wow - I am glad that you are so much better. I was also only 51, but the took a year for the docters to put me in miracle pred., however with no rasied CRP it is still PMR (obs.pro). That was 4½ years ago. I hope to recover like you

[AtopicGuy in reply to krillemy]

MG can produce blurred vision, too. It can also cause pain by preventing the iris closing rapidly when you move into bright sunlight. Bizarrely, this is called photophobia. Symptoms fluctuate, but progressively worsen over time. They tend to come on during or after exercise, then ease off with rest.

[123-go]

I have had double vision with one eye affected and it was horrible! The hospital opthalmologist diagnosed sixth nerve palsy and an orthoptist recommended a prism to be attached to the lens of my glasses to correct the problem. Every so often the prism strength was reduced until I no longer needed it.

I cannot understand why your rheumatologist isn’t recommending investigations into what is causing your double vision- a condition that I found distressing mentally and physically. Have you seen an optician for an OCT scan (optical coherence test) to check the back of your eye?

[krillemy in reply to 123-go]

Thank you so much. It sounds like I need to see a different optician. I do find it scary. I do not think she did a OTC scan. Checked mostly for cataracts.

[PMRpro Ambassador in reply to krillemy]

Here it would be a hospital eye department I'd have to go to - our opticians are pretty useless, they just dispense specs.

[123-go]

I would definitely try a different optician. When you make the appointment tell the person on the phone that you have double vision so that staff are aware.

Good luck and please let us know how things go.

[ChrissieHW]

Hello ! I was diagnosed with PMR feb 2023 and about April ‘23 noticed double vision particularly when reading. I eventually went to my high street opticians ( convinced I had GCA because of jaw/ head pain as well ) and was referrrd promptly to hospital eye clinic. Cutting a long story short and after dentist input as well I was diagnosed with temporomandibular jaw disorder and diplopia- hospital corrected the problem with prisms and said it was muscles…. I do still get double vision when I’m tired but nothing like I had before. All the best .

[ChrissieHW]

PS forgot to add that local opticians did a full review including 3D scan round and back of eye and all was well

[Zappata]

The replies here are informative. I have had double vision for some years and it has never gone away. GCA was diagnosed 2019. I have mentioned it to rheumy who dismissed it as unrelated and had a thorough (I thought) eye test yesterday and told the optician who did not seem to think it was anything other than tired muscles and age related.

[Ladyhillingdon]

I believe you need referral to an ophthalmologist your GP should be able to do.

I have horrendous double vision it did start at the same time as PMR . I do however suffer from TED thyroid eye disease and although my ophthalmologist says it isn’t active I think the damage has been done to the eye muscles. The optometrist ( technician) couldn’t fit prisms that worked for me so I have one lens taped with clear tape which blocks that eye but allows light in , it does reduce to single vision although peripheral vision is affected and I am not allowed to drive. I am waiting for an MRI and my ophthalmologist sees me frequently every six weeks .

I think what I am saying double vision needs to be investigated.

[Caloo650]

That was how my GCA was diagnosed, double vision , then headache and 2 weeks later PMR

[cranberryt]

I have had double vision for years, started before pmr. It is worse at night and worse with lights. Things like close captions on tv or lights outside at night. I have told multiple doctors and the only comment I has ever gotten is that it gets worse at night due to fatigue. No explanation on what causes it or how to fix it. It’s always seemed weird that they ask all the time, no double vision right? And I correct them but they never address it so why bother asking?

[krillemy in reply to cranberryt]

Yes - they ask that always - but never do anything!! I was refered to hospital 4 times and they never checked. I have litterally never been scanned. But did have PET-CT...

[hopely54]

When I started to get double vision I had it checked with an opthalmologist. I had a history of PMR and a relapse a couple of years before. I did NOT have headaches or a sensitive scalp . I did have some soreness with chewing but nothing severe. She did not think I had GCA. I saw the rheumy who had treated me for PMR . After checking, he did not think I had GCA but as a matter of caution he sent me for an ultrasound. During the scan the ultrasound technician asked me if I was taking prednisolone. I said no. He went out and came back and said if you can wait an hour the rheumy can see you . ( It was in the same building). I saw the rheumy and he had brought in a colleague to view the Ultrasounds and have a feel of my temples as he obviously thought it was worth sharing. Yes it was GCA and I started with , I think, 60mg of pred that day getting down to zero about two years later.

The point is - there can be many causes of double vision but headaches and scalp sensitivity are NOT always present with GCA

I wish you well in finding the source of your double vision

[krillemy in reply to hopely54]

That is scary! I do have pain after or during chewing. Dentist says there is nothing and it is not there when drinking cold. Can a Rheumy with an Ultrasound see GCA in the temples?

Even if I am on pred. and MXT?

[PMRpro Ambassador in reply to krillemy]

Tell us about the pain during chewing? Have you tried the chewing gum test?

Chew gum at once chew per second for 2 to 3 minutes. If you develop aching pain while chewing that then goes when you stop chewing that is suggestive that you could have GCA. It isn't diagnostic but was developed by an Australian group as a simple screener.

[krillemy in reply to PMRpro]

Ok. I will try. But the but does linger on for some time after I finish eating.

[AtopicGuy in reply to krillemy]

Jaw pain is another symptom MG can reproduce. The muscle fatigue usually starts in the eyes and face, then spreads to the shoulders, neck or limbs. It can even produce breathlessness by weakening the diaphragm and/or chest muscles.

Edit: MG patients often report the symptoms worsen as temperature rises.

[krillemy in reply to PMRpro]

Tried the chew gum test and no pain. I am going for an MRI tomorrow morning, feet though, but I hope it will give some answers as to what may be going on in my system as I can't believe that I have developed bilateral ankle joint lipoma - it must be something else.

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

Agree with PMRpro- think that may need looking into.

[AtopicGuy]

Well done to your ophthalmologist for considering myasthenia gravis, which is a rare autoimmune disease. As well as ocular symptoms, it can mimic PMR by producing muscle pain, fatigue, and bilateral weakness in the shoulders and neck that responds to steroids. The classic symptom is droopy eyelid(s) or double vision when feeling physically tired but not yet sleepy.

What kind of tests were done to exclude it? Did you see a neurologist?

[Dukeyears]

Yes I too have developed it ,watch TV with one eye closed to avoid double vision.

[krillemy in reply to Dukeyears]

ohh... that's maybe not a long term solution Anyway I see double up-down, and also with one I closed Sp problem with text mostly

[SkinNBones]

maybe someone already said this as i haven't read thru all replies yet. What you describe is called monocular diplopia or at least used to be in sone literatures

Some questions- more prominent when you switch between near and far vision tasks? Before it started, doing anything to causeceye strein or touching at or near eyes often?

i

[krillemy in reply to SkinNBones]

No, you are the first, and you are right. It is more prominent when I switch between near and far vision tasks, and more in the evening and when PMR is flaring. The eye doctor says it is tired muscles. I did not do anything before it started. I had a job working on a PC, but not too much, and it was really bad in the beginning of PMR, but I took it then as blurred vision or old age. It went away on prednisone but is still there now as clear bubble vision. Ring a bell with you?

[SkinNBones in reply to krillemy]

Yes many parts sound familiar . Let me try to PM you a little later on what worked for me. Please note i have not yet been diagnosed with PMR ir GCA but think i have both. And have no idea if will help with yoy. I think less responsive (“tired” “ “aging” playe a role but is by no means the only ior even main thing going on. And as you know, docs ignore monocular diplopia which is maddening as i thought id have to get used to yet another impairment.

[Ruthy53 in reply to SkinNBones]

I too have monocular diploplia .I had suspected gca and treated with high dose steroids for 18 mths . Year after coming off the steroids my lateral double vision (which was my original Identifying feature for gca )went. My eyes changed and my left eye improved. This has left me with a variation in my prisms. We went back to no prism and we are using a series of stick on prisms to try to find the best balance. They wondered if I had another medical condition so did blood tests. All negative. I have been under a lot of stress for over a year. Now realised close up no problem no double vision but middle distance increases. This happens mainly with varifocal. I’ve now got driving glasses and reading glasses which are better. I still struggle with the second image which comes and goes if I focus !! I’ve learnt to look through and ignore. It does seem at times to affect my spatial awareness.my optometrist sees me every 6 weeks and I can call at any time.

[krillemy]

Thank you. Sounds a lot like what I have. Also the varifocal point. I will have to follow up with the optometrist. Very odd though