I’m writing this on behalf of my mum who’s 74 and just lost her sight in one eye to misdiagnosed GCA. She started with a terrible headache out of the blue in a March which didn’t go away.,she noticed a pronounced vein on her temple. She contacted her Gp (pre lockdown) and went in to see her and was told it was a sinus infection and given antibiotics. The headache continued and recontacted the GP who were only dealing with phone enquiries by now, who perscribded cocodamol. A few days later on a Sunday she noticed her vision changing in one eye she contacted SpecSavers on Monday who booked an appointment at the hospital eye department. They at first thought she had an eye stroke Tia but a day later went back to the hospital and was prescribed a high dose of Prednisolene steroid. It was later confirmed it wasn’t a TIA..but GCA. Basically 8 weeks later it has been confirmed she has lost the sight in one eye. Ironically her other eye which was the weaker of the 2 has gown a massive cataract in it and my poor mum is virtually blind for now. She is on a list for cataract surgery when they start performing surgeries again or may go private but is very down. Covered in cuts, fallen over many times due to sight, dizziness. Just reaching out for any one who’s been here..concerned the cataract surgery won’t go ahead due to the steroids dose which is being tapered down...
GCA Misdiagnosed Blind In One Eye: I’m writing this... - PMRGCAuk
GCA Misdiagnosed Blind In One Eye
I'm so sorry - you are the 3rd or 4th case like this in the last few months. And there we were thinking things were improving a bit.
DorsetLady will be along later, she knows as much as anyone can about what your mother is going through since she too lost the sight in one eye because of misdiagnosis. She will tell you that, eventually, your mum will get back to a fairly normal life as she has. It will be hard until the cataract is dealt with but it will improve. I can't say how long she may have to wait - that will be something for the cataract surgeon to decide. But they will probably push all the boundaries since at present she has no vision. There a couple of other ladies on the forum who have lost the sight in one eye though I can't remember names off the top of my head.
I wish you and your mum all the best - and I'm sure we will "see" more of you in the future now you have found us.
Hi,
Me - had similar issues 8 years ago, but slightly longer run in time before diagnosis.
Might be worth trying going down the private route for surgery, as obviously your mum is becoming a danger to herself. Obviously the surgeon may be concerned about the level of steroids she’s on - but you can but ask.
As PMRpro rightly says life does go on, and surprisingly well, but it does take time to adjust.
Here are a couple of posts I wrote which might help, the first whilst I still had GCA, the second last year - might help your mum and you -
healthunlocked.com/pmrgcauk....
healthunlocked.com/pmrgcauk....
Please feel free to contact any time - and give your mum my best wishes
Thanks for the advice, will read out to mum tommorow.
Forgot to say I had cataract replaced on ‘good ’ eye about 30 months after diagnosis - but I was down to 9mg Pred.
Surgeon said he would prefer to leave it a bit longer, but I whinged at him - said I needed to drive - as widowed and no family close, plus was going to NZ to see daughter for Christmas and that had cost a lot of money - so he agreed! (NHS).
That’s worth knowing . My mum is my dads carer ...he has Parkinsons. Don’t know what dose she is on but will find out..
As pmrpro has mentioned this is happening far too often and we have a forum member whose mum is virtually blind due to negligent behaviour of gp and then the hospital.
One of the ladies pro mentioned who have lost eyesight is grammy80 and I am sure she will chat yo you when shes next online. She is in the states so there is a slight issue with timing but I am sure she can help you and your mum. Good luck and please keep us up to date on how you get on. Xx YBB
I am so sorry to hear about your mother’s experience and of the problems she is now having. As DorsetLady said things will improve with time once the cataract is dealt with and the adjustment to living monocularly. In the meantime she sounds as though she needs some support right now especially as she is caring for your father. Have you contacted any local agencies. Many eye clinics have an Eye Clinic Liaison Officer (ECLO) who is there for help and support and are available during lockdown for telephone advice. You may also have a Rehab team for Visual Impairment and the RNIB are another good source of help. If she is thinking of having cataract surgery she would need to make sure that her surgeon has access to operating theatres. I work in a small eye clinic and private surgery is carried out in the NHS facilities out of NHS time but at the moment not even that is happening. I do hope things improve but it is a very stressful time and also frightening for her so she’ll need lots of emotional support. She’s lucky to have you fighting her corner.
Have no advice I’m afraid - just to say how very sorry I am that this has happened to your mum and wish you both the very best for progression in getting the “ good eye “ sorted and access to the right help and support. Do keep posting and reading on here if you can as it is a very supportive and informative forum. All best wishes to your mum. Xx💐💐
I’m so sorry to hear about your mum’s misdiagnosis. I too had a similar situation .. I attended my GP practice nearly every day for 3 weeks (about 9 years ago) due to dreadful pain in my head, temple, jaw etc on the right side. Over the three weeks it was diagnosed as migraine, sinusitis etc. Fortunately for myself, one day I presented again and my GP was away, I saw another GP, who immediately recognised the symptoms and rang my Rheumatologist whilst I was with her. As a result I was prescribed 60mg of Prednisolone and thank God I improved within hours. That is why I think it is vital that we each learn from one another’s experiences and indeed why I value this forum so much. Love and blessings to your mum.
So sorry to hear about your mum, horribly frustrating that she tried to sort it out and it could have been prevented. This misdiagnosis is a terrible (for some reason ongoing) problem. Several people on here including me have parents who lost both eyes due to late diagnosis of GCA. My mum was told it was just one but the other went a week later, staying on the high dose in the beginning is so important.
Do you know if your mum had a tingling and/or painful scalp as part of her symptoms, just a light touch on her hair?
Hi, So sorry to hear about your mum. No, none of those symptoms. She was exhausted and said she had no appetite on the weeks leading upto this.. She said the headaches were like nothing she had ever had..dreadful .
Yes absolutely right about the headaches! Excruciating.
Just before mine struck....I was driving back to Maine from Nova Scotia. I could not believe how exhausted I was. When I was driving I felt like I was peddling the car...everything was an effort. I too had no appetite whatever...not only no desire to eat...but never got hungry.
NO...I did not lose any weight. Lack of appetite was a persistent thing for me. I'm not sure what is available where you are, but losing part of my sight allowed me to get services I could not have qualified for financially. I got home help, meals on wheels and service from the Iris Foundation. I believe you have that in England...they were so generous with everything from magnifiers to tricks to control my heat. xo
Right. The headaches do sound awful, what a nightmare.
My mum (also 74) had bad ones and even told the doctors she never usually had headaches, they still didn't get it.
I asked about the scalp as both my mum and another lady had a very similar experience there and both lost full vision very quickly without the sight being able to be saved. I've been wondering if the route the inflammation takes gives slightly different symptoms along with the common ones.
Yes it may do - here’s a link showing arteries of head.
exploringnature.org/db/view...
The temporal artery, which is the one that can be Biopsied, Is close to the skin and does not feed the blood to the eye, so although it can look nasty is not the one to be be most worried about...but is very often an indication that’s somethings wrong.
However, it isn’t always enlarged nor painful- mine never was.
It’s the much deeper (so obviously cannot be seen) ophthalmic artery which (as can be seen in picture) leads directly to the back of the eye feeding the optic nerve.
Once that gets inflammed enough to stop the flow of blood to the optic nerve- afraid it’s Good Night Vienna!
Sometimes a patients gets a warning that the blood flow is Interrupted with temporary sight losses, or intermittent blurring etc, and if treated quickly with steroids can be reversed.
In other cases (like your mum, me and others) where it’s not acted upon quickly enough permanent sight loss occurs - and of course sometimes it appears to happen so quickly that nothing can be done.
I think the problem is, that the inflammation in the arteries doesn't necessarily occur the evenly everywhere , the affected cells seem to be randomly dispersed through the blood vessels.
Another conundrum is that very often one eye is affected first , or solely, so does the optic nerve feed them slightly differently? In my case, the Ophthamologist was concerned about my second eye, until after 2 weeks of treatment he was happy.
Similarly some have issues with ears! Others don’t.
Very informative, thanks.
I can see how the blood supply to the scalp and opthalmic nerve can both become inflamed, ...or not... it must take different routes 
what a terrible condition.
faculty.washington.edu/chud...
I think it must be if the damage is at the chiasma - and how large the area is at first. If I remember rightly there is something called the critical perfusion triangle and if enough cells are damaged due to low oxygen supply to die off that can then spread to adjacent cells, killing them off in turn so it spreads.
That’s interesting - thanks. Learn something new every day!
Love neurolgy for kids! Mind you - they're still aiming pretty high 
Oh, I can manage kids info!
I meant the kids ...
....none taken, my friend 😳
I am so sorry to hear about the situation I too was diagnosed with TMJ or they thought it may be a tooth problem after numerous dental visits I had aCAT scan I finally realize that it had to be something else and I presented myself to my ophthalmologist and he confirmed my feelings that it was GCA after we did labs hopefully hopefully she can resolve some Of the residual effects can be resolved
Hello!!! I'm so thankful you found this site. When I found this forum and the wonderful people on it it turned my life around.
In July on 2019, I had an onset of symptoms like your Mom. You didn't mention if your mom had jaw or facial pain, I did. My Doctor diagnosed me with a sinus infection and did give me prednisone only because I have asthma and he didn't want it to get into my chest...now, that is a funny one!
I finished my prednisone and three days later woke up and was blind in my left eye. I was put on IV prednisone and 125mg per day which later dropped. More about your Mom, is she seeing someone not who is regulating her prednisone? Is she still having any discomfort in her head?
It seems like the end ....because it is the end of what we knew and how we managed. You have already heard from wonderful gals who have dealt with these issues far longer than I. HOWEVER, tell Mom, as they told me....you adjust, it takes time but you adjust.
I can recall looking in my closet and thinking I'll never be able to see all those clothes and having a friend thin them out and give them away. I gave away all my jewelry. I gave away lots of my craft stuff. (Some of it I'm glad I did....some not so much)
Since I live alone and in an apartment, my family from Canada came down to Maine and made my apartment safe! That was a huge help and sounds like maybe some changes need to be made for her...I'm not trying to be bossy....just recalling myself. They moved out some chunky things and knick-knacks and put my furniture all around the perimeter. Oh, my, it made it so much easier for me to move around. What does your Mom seem to trip over? My balance took some adjusting and at first I used a cane around my apartment all the time.
When somebody turns out half the lights.....it seems so dark!! Please assure her she is beginning a process and she will need your support and the gals on here are terrific....in time she will see the full world.
I'll be 80 in September so I'm not such a spring chicken...but after you read the stories here and get the valuable information folks have to offer, I know it will mean a lot to you and your Mom. I'd never heard of GCA....Dorset Lady and PMRPro have lots more experience than me but I hope I can help as she goes through the journey. There is hope...and you are both in the right place.
👩🏿🤝🧑🏾👩🏽🤝🧑🏾👬👩🏾🤝🧑🏾👩🏾🤝🧑🏿👩🏿🤝🧑🏻👨🏿🤝👨🏻👨🏿🤝👨🏾👨🏾🤝👨🏾All these wonderful folks are here for a hand or a way to get an answer or just a tip. Please give your Mom a big hug from me!!💖
I live in Maine....so I'm in a different time zone..to say the least...xo
Well done, you sound like you have been through a lot but not allowed it to hold you back.
Thanks ...there were a many times that the support of the folks on this forum pulled me back onto the path so that I could get to where the light was!! Sometimes I just couldn't understand what I was experiencing...then others shared how they felt the same and in time got through it. The hardest part may be to keep the faith and roll with some of the processes....but if you are on here...you don't have to do it alone.
I'm in Maine and alone with family in Canada and Indiana...they were great..but the forum was right here in my living room!
xo
I am sorry to hear about your Mum and send her lots of love.
I say this each time I hear of someone going through what your Mum’s experiencing which is how lucky was I? My sight returned and I am forever thankful to my GP at the time for his vigilance.
You’ve had lots of advice and Grammy80 says it as I would in terms of support your Mum needs right now. Your Mum will adjust given time and help.
My late Dad was blinded in one eye in the army and we kids never knew until much older as he never spoke about it. He drove and did a job that involved close work.
My neighbour recently lost his sight in both eyes to GCA as a result of untreated PMR.
I hope your Mum, and you, are comforted a little by all the goodwill messages from here and once again tell her we are thinking about her. 🌹
I was lucky. Having recently been diagnosed with PMR I had just read all about GCA. I noticed the veins between my eye and ear were raised and I couldn’t sing because my jaw hurt. By 9pm I was fairly sure and my husband drove me to a&e. There they took blood tests and within a short while I received a steroid injection and was given 60 mgs steroid pills To take daily. A friend had a similar experience with her GP And received the steroids immediately. In my view all GPS and hospitals should be up to date with this. It is not rare. Far too many people miss the boat. Ps. Most optometrists and all Ophthalmologists will recognise this condition.
I was visiting the site, thank heaven for it, and looking at your post again about your Mom, how is she doing? I also got the 'sinus infection' diagnosis and lost the sight in my left eye last August. It does get better...but I'd love it if you would update me. Thanks xo
Hi,
Mum has been really down, angry with the misdiagnosis. She has lost the sight in her left eye and has a very dense cataract on the right leaving her virtually blind. Been buying lots of books on Audible which Alexa Echo dot reads to her..been a god send as unable to read a book or large print.
Things are starting to move here and hopefully will have surgery on the cataract in the next few months..she is on 30 of Pred so will have to get it down. She has also been to a low vision clinic run by NHS and got a few mega magnifiers ordered which she’ll have soon to help her . Just hoping there’s not a second wave of COVID before her cataract gets sorted. Hope your well and thanks for you kind words.
Fingers crossed for speedy operation.
so sorry for your poor mum suffering from an unnecessary eye deterioration. This site is full of helpful people who know more than me but I’m glad your mum has you to care for her Mums Are Precious
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