Depressed After Losing Peripheral Vision Loss

I am feeling so low after 10 days and no ideas as to why i have lost my peripheral vision and my normal vision is reduced. All MRIs, CT scans and angiograms proved to be normal. I am now trying to get to see my rheumy to ask what is happening to me. My question is this how do you stay positive with this disease. I just feel tired, having lost my hearing, my mobility and now my eyesight to this disease. In Scotland we have no experts so I feel I have been left to rot. Depressed and not seeing a way out.

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  • Oh, mate, I don't know what to say - I'm in the pits of despair at the moment too, which doesn't help me to help you, does it?

    All I can advise/say/plead is that you must keep talking on here - either in private messages with somebody you've got some rapport with (I'm up for it ;-)) or here on the public board. I'm always happy to cry in public because I think it helps others but I know I'm rare in this respect.

    Losing your vision - whichever part of it - is the pits; it's something we all treasure and wonder what we would do without it. I imagine it's even worse when no reason can be found. Just keep talking, lovely, there are loads of us willing and happy to listen.

  • Did your tests include nerve conduction study or EEG (I think that's what it's called). Do you know what they were looking for? Did they know what to look for?

    'Normal' can mean that they didn't find what they were looking for, e.g. lesions on the brain. If they didn't find a reason for you not having peripheral vision and they are not experts, then perhaps there is cause to hope that it will improve?

    Perhaps you could get a referral to Moorfields in London. People go there from all over the world and they have the absolute top eye docs, many experienced in BD and its effects. They might also be able to refer to a suitable neurologist. If the docs you are under now are at a loss then it is reasonable to ask them to refer you to someone who knows more about it than they do. There is no shame in them not knowing, the majority of specialists don't, so it would not be rude to ask.

    If you haven't done so already, do contact the Society and see if they can recommend anyone in your area and if also if there is a support group.

    Your question was how do you stay positive and I haven't answered that, but I hope what I have said may help in some way.

    Meanwhile, as Devon says, get yourself on here and share.

  • I know it's difficult to be positive and I feel so bad for you. I hope you get some news as to what is going on.

    It can be so frustrating, I was called a hypochondriac on so many occasions until I ended up in hospital. Staying positive is key for your health (which is annoying because when you are so ill it is impossible to keep positive!). I feel for you because I have been told to be positive when I'm depressed and it's easier said than done!

    I try little things, even watching a DVD of your favourite comedian, going for a walk with my dog, meeting up with friends, getting lost in a book...small things. Talking on this forum helps too because everyone on this site shares common ground. I hope you get some good news or at least an explanation on why this is happening.

    Thinking of you.

  • I wonder if this would help you - I have copied and pasted it from another thread.

    " The Society has a list of consultants for the UK that includes Scotland please email info@behcetsdisease.org.uk and we will send it. We also hope to start a Scotland support group soon, which we mean these issues can be better discussed."

    I think the Society also has a list of members who are willing to have their details shared - perhaps there is someone in your area. Support groups can be started by anyone involved with BD - in their homes, at a mutually convenient location, wherever suits and is possible.

    Fingers crossed there maybe something soon that will help you.

  • Thank you so very much for your help,

  • It's shocking that docs still dismiss things like this, even when we have been diagnosed. Unfortunately it is not uncommon for it to happen pre-diagnosis. I always ask myself if I am seeing the right person, or combination of people. e.g. what is my eye doc's experience of BD, does he, for instance, know that visual problems can be neurological and would he refer me to an appropriate neurologist? Much as we shouldn't have to do these things ourselves, and goodness knows we have enough to deal with already, it sadly is still sometimes the case that we need to take matters into our own hands. I would never accept 'nothing to worry about' or shoulder shrugs, unless I had a full explanation of how they know this and why. If they can't answer that, then the answer isn't that it's 'nothing to worry about' (although that may ultimately be true) but that it is beyond their particular expertise and they should be prepared to do something about that - you certainly have the right to ask.

    I have been seen by a Cornea Specialist, an External Disease Specialist (eg, adinovirous) a Uveitis Specialist and a 'general' Eye Specialist with a special interest in BD. All of whom communicated with each other and also my other docs, eg Neurologist. It was the best care I could possibly get.

    It took around 7 years to get to that point, post diagnosis, and it was very difficult and stressful, but it taught me to forge ahead and the best way to do it (for me) which ultimately made it easier to manage all appointments with all specialists. It would never take me that long again. The last time I needed to change consultants it took one request and 3 months.

    It could well be that if someone tells you it's nothing to worry about, that it is the truth (fingers crossed) but as I said before, they need to back it up and explain how they know this because of course we are going to worry! Sometimes it's just a matter of poor communication, rather than a lack of knowledge.

  • Hi All

    I was diagnosed with BD 7 months ago after 10 years of battling to get someone to listen to me! In the last 4 weeks i have lost my peripheral vision in my left eye. The professor i see at the Sussex County referred me to Moorefields 2 weeks ago, i spent 4hrs under going tests. The test showed a lack of blood flow behind my left eye which has caused permanent damage. Please please go back and ask for further tests or a referral to Moorefields . I feel for you as do i feel for all of us suffering with BD . Im here to talk or listen if you'd like too ?

    Much Love

    Sarah xxxx

  • I'm sorry to hear of our struggles. I've lost my hear as well two years ago., I had cochlear implant put in but its only restored about 30 percent. My vision too is declining. I get uveitus alot. Try to find a really good opthamologist w behcets experience. That is key to ur treatment., I wish u success

  • Thank you so very much.

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