Sorry to be negative, but I thought someone might be able to help.
I was diagnosed 4 years ago and have suffered 1 acute relapse requiring steroids last year. However I now have Nystagmus in left eye and have been told MS has caused it and can’t be cured. Very straight talking specialist.
i am now worrying I will end up with it in both eyes, I will lose my driving license and won’t be able to work and won’t be any use to anyone just a burden. I am feeling very emotional about it last couple of days and running through countless scenarios and ‘what ifs’.
Any thoughts or hope?
Thank you
Tracey
Hello Tracey, Im sorry I cant offer any advice re the eye problem, but your post`s angst touched me and I just wanted you to know someone has read it and wants to support you.
I am also someone who sometimes dwells on the what ifs too often.
much love Pollyxx
Sorry but I too can’t offer any advice other than making another appointment to really discuss what could happen in the future and as you know, drugs are coming a long way so who knows, there might be something to help or slow progression. Never give up hope
Thank you both for your replies. I don’t normally get upset about this but last couple of days there have been tears which can only be at certain moments as still haven’t told our children.
Hopefully research will will continue and there may be not necessarily a cure but something which can halt progression.
xxxx
There is a host of things that MS could do to me, the thought of any one of which would give me the screaming horrors if I wasted a moment of sweet life thinking about it. Sorry if that sounds facetious, but it’s actually too serious, all this, for one to be entirely serious while staying sane.
Hang on in there. The tiresome line about cheering up because it might never happen is one that grates on the nerves at the best of times. It remains, nevertheless, true, and I think we all have to make darned sure we don’t forget it. It’s the only way to get by.
Alison
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Tracey
sorry to hear about the nystagmus in your eye.
you are obviously worried about work. Does your job involve driving other than to and from work ?
i have had MS for over 12 years and Nysyagmus in 1 eye has been a symptom since day 1. I still work although my job is sitting at a desk all day. I have found getting glasses with prisms has helped with my eyesight issues a little.
access to work through the DWP are there to help with travel issues & costs should driving become an issue. I am on a 3 year licence with the DVLA due to the MS and take assessments every 3 years.
catasphrothising is a common problem when something like this happens and I have learnt that it doesn’t do much good and that they is little I can do sat there worrying about what if.
I can still think what if but I try to turn it around and put in place solutions to them and look at them as problems that do have solutions.
i hope the eye problems don’t set you back.
neil
1 Like
Hello Tracy
you are catastrophizing. It is only natural with something as uncertain as MS to look at the blacker end of “what if”. In the early years of my dx I used to think that the worst scenario for me would be to have eye problems that stopped me driving or reading and to be in a wheelchair. Here I am many years later - I no longer drive, reading is a chore not a pleasure and I’ve got a bright red wheelchair…but am I a burden of no use to anyone? I hope not. I have a very full and happy life, I do lots of volunteering and my days are usually busy.
what I am trying to say is that you are jumping from eye problems to catatonic and there is a world of difference. MSers are remarkably adaptable and what may seem like a deal breaker to you right now would be just business as usual if it actually happened. The one day at a time advice that is often trotted out may seem a bit trite but it’s actually true. Don’t squander time worrying about what might happen tomorrow and completely miss out on today.
I have made finding ways to do things the sort of mantra of my MS. I want to get out and I can’t walk much so I use a w/chair, I can’t read but I still love books so I listen to audiobooks, I can’t drive so I use public transport. Neil has hit the nail on the head - MS symptoms are problems looking for a solution.
I hope you can feel better soon - if you are not able to shake yourself free of these black thoughts perhaps a course of counselling would help. I got very low after I moved house but a few weeks with a psychologist got me back on track, more positive than before.
Jane
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catastrophizing - a brilliant word for exactly what we are all prone at times to do. MS takes away an awful lot from us physically, but if we dwell on the negative possibilities, we lose what is good and positive about now. I spent years saying ‘at least I can still walk’. Now I can’t walk but at least I can still read. In the future it may be that I can’t do that, but I’m not going to depress myself by worrying about what may not come to pass.
Sue
2 Likes
Hi there,
I’ve also been told I have nystagmus but my optician doesn’t think it’s a problem yet. Might be that your optician can give you some useful advice on this one. Good luck.