Slowly loosing my eye sight and worrying... - Behçet's UK

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Slowly loosing my eye sight and worrying...

MusicFreak2396 profile image
15 Replies

Hi everyone!

I've been suffering with severe headaches and loss of vision (& red bloodshot painful eyes). However, I have been thinking about whether an ophthalmologist doesn't find uveitis. Could it be my brain that is causing the vision loss? I'm now classed as partially blind... Which is terrifying, and its getting worse everyday.

If anyone could answer, that would be wonderful. Thanks x

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MusicFreak2396
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andreafm profile image
andreafm

Hi there

Having bloodshot eyes, with headaches and loss of vision is a sign that it maybe uveitis and you should be seeing an opthamologist as soon as you can.

They should be able to tell if it is uveitis or not as there are other reasons for having bloodshot eyes which could be a separate problem from the headaches etc.

It is really worrying I know because I too have had vision loss increasing over the last years and it can be coming from your brain rather than your eyes as such. An opthmologist will be able to look into your eyes and will also be able to arrange more tests if they do not find you have uveitis. If they think it is coming from your brain they will probably do an MRI to see if it is coming from your brain. This doesn't hurt and is like a form of Xray to be able to see what is happening and start treatment very quickly if there is a problem that needs treatment.

Have you seen an opthamologist or are you waiting to see one?

If your eyes are bloodshot now you should try and see somebody today if possible. Please try and contact either your Doctor or at least visit a good high street opticians as they will be able to look into the back of your eyes to see if it is uveitis and will be able to write a letter for you to see someone urgently.

I have attached a link from the Behcets Society about eye problems in Behcets and you could print this off and take it with you to see your Doctor or Optician. I also have attached one about headaches as this could be a separate problem but still should be looked at.

behcets.org.uk/wp-content/u...

and

behcets.org.uk/information-...

I have read some of your other posts and know how difficult it is whilst waiting to see Doctors and hear about diagnosis. Stress really does make any condition worse. The main thing with eyes and headaches is not to wait and to try and see somebody straight away. I know what it's like to worry that you are not going to be believed or they are not going to find out what's wrong, but that is why it is important that you see somebody when the bloodshot is there.

Can you get someone either at home or a friend to go with you and that can help you with this You can always show them what I have said and the information I have given you from the links above.

You need to brave and we are always here to help if you need it.

Good Luck

Andrea

Great advice from Andrea there.

We all know how terribly worrying and stressful this is for you. If you are officially classed as partially blind and were told you have three weeks left until you go totally blind, then can you go back to that person either for further advice or for him/her to refer you urgently to someone appropriate?

It seems odd that someone would tell you that and not do anything about it. He/she had a reason for saying that, so they must have an idea of what is wrong

Andrea's advice about taking someone with you for support is excellent - dig deep, find some inner strength and insist that someone treats your eye problem urgently.

andreafm profile image
andreafm in reply to

Thanks for the addition Tigerfeet

Good points to make :)

Andrea

Shalom-yall profile image
Shalom-yall

Oh, I am so sorry you're experiencing this. I too have loss of vision, double vision and a blind spot in my left eye. It is frightening. I went to an Ophthalmologist and was told I had something called Convergence Excess Esotropia (double vision). I wear prism glasses. He did a very thorough exam on my eyes and said that they mostly looked healthy except for the muscles. I asked him about all these symptoms and he said these were certainly symptoms of Behcet's. He recommended a brain scan, but nothing showed up! So now I'm really concerned! If you don't know what's causing it, how do they treat it??

I hope you can find a really GOOD Ophthalmologist that will do an extremely thorough exam of your eyes, and a good Neurologist! I can so relate to the fear you're going through. ?

MusicFreak2396 profile image
MusicFreak2396 in reply to Shalom-yall

Thanks xxx I don't think I'll get an appointment for another 6 or 7 weeks. Everything is really blurry and double at the moment. I can't see any colour in my right eye and everything is dark. Ive also got tunnel vision. My last opthamologist said he couldn't see anything. It's extremely painful at the moment. However I've also got severe headaches that my doctor is giving me oral morphine for. It honestly feels like My head is going to blow up. Haven't been out in a while... Just curling up in bed.

Eliciasmom profile image
Eliciasmom in reply to MusicFreak2396

Hi, sorry I don't see a new post from you. Was wondering how you are doing?

molee profile image
molee

Hello, l too have had problems with my sight and after months of trying to get help it turned out to be glaucoma. By the time l got the proper help l had lost most of the sight in my right eye. Go to your doctor and insist that you see someone to diagnose your eye problem. Once your sight had gone you can not get it back so be insistant. Even go to your local optitian and ask for a pressure test on your eyes. My heart goes out to you as l know how frightening this can be. Don't be passive about this problem, it is you sight and the quicker you get treatment the more of your sight will be saved. All the best Molee.

MusicFreak2396 profile image
MusicFreak2396 in reply to molee

Thanks molee x I'm working on it x praying for you x Siobhan x

SuenMike profile image
SuenMike

This could be acute glaucoma. Please get to your nearest A&E as soon as possible to rule this out. My mother suffered this and consequently lost the vision in that eye.

MusicFreak2396 profile image
MusicFreak2396 in reply to SuenMike

My opthamologist told me not to bother him again as he couldn't see anything wrong and I was " an insane hypochondriac and a bit of a waste of his time". I don't understand how they can't see anything wrong and yet I can barely see. I'm terrified. X thanks for your answer xxx god bless x

So who declared you officially partially sighted and said you would lose your vision in three weeks? That is surely the person to get this sorted for you.

GUEVARA profile image
GUEVARA

Any opthalmologist who says that to you is clearly an idiot. If he is saying that there is no uveitis in your eyes or no present eye problems, then the problem lies elsewhere. Who is your main consultant? You should be sent for an MRI scan to check your brain for any neurobehcets activity. Are you located in the UK?

I had all kinds of people calling me a hyperchondriac (?) early on in my Behcets Life! How dare they?

Let me know how this goes. If you are losing sight it needs to be dealt with immediately. I would go to a and e.

Spot on advice from Andrea earlier.

Tim

Shalom-yall profile image
Shalom-yall

Oh, I can certainly empathize! I just posted a question re: double vision and fading vision, which like yours, is progressing. I also have an intermittent blind spot in my left eye. I am so frustrated with ophthalmologist as I've gotten four different diagnoses! Now the last one says I have nerve damage in my left eye and will probably need surgery. This is terrifying for me as I am an artist. I wish you the best!!

inasense profile image
inasense

I know this is an old post. My vision went from being 20/10 to slowly degrading out of nowhere about 10 months ago. It has been the most depressing and frightening experience of my life, and no doctors, regardless of their specialty or prestige in the medical field, can seem to figure out what is causing this. You likely won't see this, but I hope you were able to find a solution and regain your health.

runninggirl08 profile image
runninggirl08

Music freak, I'm so sorry about our eyes. It is vital that u see an opthalmologist asap who is experienced w behcets. I don't want to scare you, but things can progress quickly w these eye issues., I hope u find relief soon. Sending prayers

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