Sticky Blood-Hughes Syndrome Support
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Getting there with my eye problem

After a mixture of NHS and private appointments I am now nearer to a diagnosis of what is causing the pain and discomfort in my eye. Having an MRI to rule out neurological but have also been told I have a squint; apparently not only children get them but older people too. If it is this then I will have to have some kind of surgery and will have to be referred on to yet another expert.

It certainly makes sense of why I get a headache, eye pain and discomfort particularly if I try to use my ipad or kindle for too long, or even watching TV. I also realise how unconsciously I adjust to things without even realising. I gave up on books months ago but thought it was because of cognitive rather than eyes but in recent weeks I've been relying more and more on audio books. And never seem to be on the mood for doing my tapestry either.

I don 't know if it is a feature of Hughes but the older I get some part of my body lets me down. I am only 61 but my 92yr old dad has more get and go than me!

6 Replies

I empathise Panda - I am 50 and my 82 year old Mom is in much better condition.

Your eye stuff sounds like mine - no answers for me yet.



Thanks. Hope you get some answers soon. I had no idea eye problems could be so complicated. X


I'm glad they have found the reason behind it for you, it's not nice when we sometimes look at older generations & they seem to get around / function better than us at times! but I always have the opinion well good for them & there is always someone else worse off than me.....

Hughes can let our bodies down a lot... I get fatigued quickly, apart from the joint pains, plus my legs & arms have 'stopped' working before now & I've struggled to get back from wherever I's as if someone has just pressed a switch for off?!!

Keep positive, Sue x


Thanks. Know what you mean about the 'off switch'! We went out today to see Autumn colours in a garden and I only just made it back to the car!

Life is a bit tricky in our house at the moment as one son is parting from his girlfriend of 4 years and the other is making wedding plans. But keep positive as much as I can and am lucky to have a lovely husband. x


Hi Panda - not sure which part of the UK you are based, but if possible try and get a referral to Moorfields Eye Hospital. Although their main hospital is in London, they have branches all over the country. They have looked after me brilliantly since I went to their A&E with a huge rise in eye pressure. In London the A&E is open 24-7 and its a great way to get seen if you don't want to wait for a doctor's referral. Can't praise them enough. Good luck and hope you feel well soon.


I am fortunate enough to live within fairly easy distance of most London hospitals. The consultant I am being referred to is based at St George's and specialises in squints so she will be my first port of call unless anything shows on the MRI. My friend was treated at Moorfields and they were fantastic.


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