A bit about me : So basically I got diagnosed... - Glaucoma UK

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A bit about me

Crazyinlovee profile image
16 Replies

So basically I got diagnosed with Glaucoma in like may 2023 and I lost a lot of vision. But I had physical symptoms for almost 9 months before that with severe eye pain and my vision slowly going. I went to the doctors every single time but they always kid diagnosed me for having a headache. They just gave me painkillers and told me to go home. And then my vision was getting worse and the pain wasn’t going so they almost put me on medication that could’ve made me infertile😀.

Anyways, turns out it was actually serious and by the time I was diagnosed I ended up being blind in my left eye and losing most of my vision in my right eye. I also had good eyesight before this so I always wonder if they diagnosed me properly would I still be able to do things that I can’t do anymore. The glaucoma progressed so fast because I’m a lot younger, my eye pressure was at 60 for a whole year before they diagnosed me. Caused a lot of irreversible damage and now I’m 18 slowly losing hope and motivation to do anything for myself anymore.

Because I mean there’s not a lot I can do now, like my entire future depended on me being able to see and now that’s basically gone. I cant drive and I lost all my independence. This is the worst I’ve ever been mentally and physically.

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Crazyinlovee profile image
Crazyinlovee
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16 Replies
Brychni profile image
Brychni

*hugs*

P0inteN0ire profile image
P0inteN0ire

What a desperately heartbreaking account. My thoughts are with you It is so sad to hear that your symptoms worsened while you were being misdiagnosed.

I know what it's like to be shown the door and told to take painkillers

GardeningDorset123 profile image
GardeningDorset123

Love and luck to you .where are you?

Crazyinlovee profile image
Crazyinlovee in reply to GardeningDorset123

Luton

GCPizza profile image
GCPizza

Do contact RNIB on 0303 123 9999. They can provide a lot of help and advice. You can still live a full and rewarding life. All the very best.

valfrance profile image
valfrance

I am so sorry for you. If you had eye pain why did the doctor not advise you to go to an optician if your vision was clearly affected

Please get help with your needs..

Crazyinlovee profile image
Crazyinlovee in reply to valfrance

I went to the opticians too and the hospital but they all misdiagnosed me, telling me the eye pain was because of a migraine.

I am just so angry for you, there is so much we can do in hindsight but in the case of our health this is why we rely on the professionals. Personally I would see about suing them for starters it won’t bring back what you have lost but it may prevent it happening to someone else. I agree with GC Pizza get in touch with RNIB they can give you all the advice and help on offer.

I am 66 and now unable to drive because of mismanagement of my own case, I can’t see clearly but not blind fortunately. You are so young and to have this happen is heartbreaking when it could so easily have been avoided. Take care my friend..

Crazyinlovee profile image
Crazyinlovee in reply to

Th ank youu I’m thinking about suing, everytime I think about how much vision i would have left if they caught it when i still had vision.

Bellamolly60 profile image
Bellamolly60

so sorry to hear your story .i have battled with This condition

Since the 1983 right eye doing well unfortunately the left

I had problems currently off work due to severity off high

Pressure I go next week for update on condition

But I agree it’s all about confidence and being able to

Be independent

God bless you and take care 🇺🇦👍🔴⚫️⚪️

frankthebank profile image
frankthebank

Hi, Sorry to hear your story, you really have been through a lot, to suffer that high pressure for a year and to be turned away for so long as just a headache really shouldn't be acceptable, it seems like it would be worth looking into a no win no fee medical case solicitor to see if you have a case for compensation. Can only imagine how much you much have suffered and how debilitating it was and still is for you. As for going forward I know it much not seem like it but you will pick yourself up and fight though this, life is a endless battle; you will find strength you didn't know you had. I wish you all the best. Take care 😊

Crazyinlovee profile image
Crazyinlovee in reply to frankthebank

Aww thankss

Julunder profile image
Julunder

What a terrible experience that has affected your entire life. I am much older but went through the bad experience of botched surgery and no responsibility for the pain and loss of some sight in the left eye.

Have you tried to get a second opinion on your condition? I moved away from that first surgeon and eventually got the treatment I should have had in the first place.

Words aren't enough.

Take care and believe in miracles.

muddledme profile image
muddledme

Hello Crazyinlovee,

I agree with the previous helpful replies . You have already taken an important step to get on the forum and hopefully will aim to preserve the sight that remains. As Glaucoma can be genetic it would be well worth telling any siblings or parents.

The forum , Glaucoma UK helpline ; ( 01233 64 81 70 ) ,all their booklets and the many very useful Webinars (on You Tube) have been so helpful for me and I feel that I have learnt much more about Glaucoma than at the rushed eye clinics.

Do get a notebook to take along to your medical appointments with all your questions and where you can fill in a record of your symptoms, treatments and eye tests. Over the years I have found this invaluable.

Maybe you may feel like informing your M.P , the hospital chief executive or any other medic involved in your neglectful treatment. Perhaps even the media. This may also help others.

Very best wishes

Trish_GlaucomaUK profile image
Trish_GlaucomaUKPartner

Hello. I'm so sorry to read that you have had to go through such a traumatic time at such a young age due to misdiagnosis.

There are many organisations apart from the RNIB who you can reach out too.

Two that come to mind are The Pocklington Trust who are there to support young and old. There is also Sight Concern who cover the Bedfordshire area including Luton. Check out their websites. Hopefully you will find them helpful.

pocklington.org.uk/

sightconcern.org.uk/

KieranGlaucomaUK profile image
KieranGlaucomaUKAdministrator

Hi there. I would just like to add from Trish's comment above. I too am so sorry to hear that you have suffered this as a result of misdiagnosis.

The Powell Family Foundation aim to help those under 25 with visual impairment. They offer grants from £100-£5000 - tpff.org.uk/

Hope this helps

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