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Scared

Hi

Its been a while since posting.

i have spent most of today in tears and was hoping one of you would know something about this.

For the past few weeks my left eye has been aching and at times I have felt close up vision not as good as it has been. I saw specialist a couple of weeks ago who didn’t mention relapse but booked me in for MRI scan which I had on Friday. Looking back through medical notes Dr signed me fit to drive in 2014 now on 3 year license as opposed to 10 but it was noted I have Nystagmus in left eye. I haven’t felt like this since it was noted back in 2013. I am now petrified I will lose driving license.

​i thought I would have a little longer before MS won, I have never felt so useless. Scared about job and mortgage and day to day living.

Tracey

Oh hun…I feel your pain and worry.

I know, this rotten disease takes so much from us.

But how does your eye feel when driving? Do you feel safe enough and that you could stop quickly enough in an emergency situation?

Think about if you really are safe. You wouldn`t want an accident to happen due to poor sight, eh?

I used to worry how on earth I`d manage if I had to give up work.

That happened way back in 2000 and after a stock check I did manage. I had to stop driving too.

We do worry so much about the future and the what ifs…they are horrible, but maybe the outcome isnt always as bad as we imagine.

Take care darlin`.

much love Pollxx

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We moved into a bungalow 2 years ago as critical illness paid out and bungalows are much more than houses she we didn’t pay off mortgage. I thought I was future proofing being on flat.

My husband doesn’t drive and if I can’t, life will be so different and our two girls who don’t know will have to be told. I was hoping I could wait until they were old enough to understand.

i am feeling so useless and scared and don’t know anyone personally with MS to talk about it.

Xx

hi Tracey,

I’m sorry that you’re so down, i know lots of us have been through the fears that you’re dealing with now. It’s good that your Dr has had you MRI’d. Do you know when you’ll get some feedback from it/them. Have you been diagnosed (dx) with MS, or are you just finding out what’s happening? The aching you have in your eye, could be from optic neuritis (ON), which is common, have you talked to your Dr about this?

I see that you’ve just joined this site, were you a member before the ‘upgrade’? Either way welcome! I know that I’ve found my fellow MSers an invaluable source of advice and support.

wendy xx

Hi Wendy

i was diagnosed 4 years ago in a couple of weeks time. I should get results from scan in a week. Apparently I have Nystagmus in left eye. Everything I read about Nystagmus is doom and gloom and saying people lose their license. I don’t have it in both eyes and my eye doesn’t feel like it does at moment all the time.

i feel so stupid have barely stopped crying today.

xx

Hi. Sorry you’re feeling so low. I’ll try to put your mind at rest on a few points.

The 3 year licence is completely standard for people with MS. On renewal your doctor / consultant will tell the DVLA whether your condition has worsened enough to make you a danger on the road. Not much you can do about that but optic neuritis does usually improve like other relapses.

My son has nystagmus and, while he may not be able to drive if his vision weakens, the actual nystagmus wobble isn’t what would stop him driving. Unless it worsens it shouldn’t be an issue.

I recently told my children about my MS and they took it far better than I had anticipated. They are more resilient than we realise. It also feels much better now they understand why I am tired / in pain. I no longer feel I am keeping something hidden.

Access to work can help with transport costs to and from work if you are unable to drive.

Worrying about the future only causes stress that won’t help your health.

Chin up. Try to stay positive. There is (usually) a solution to every problem. You will need to be feeling positive to try to find them. Please bear in mind that MS can also cause low mood which may be affecting you. Your GP should be able to help you with this.

Take care. xx

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hi again,

like others’ i definitely think that trying to be positive is a good thing, but it isn’t stupid to cry about this, pain in the bum condition, we cry as a release of stress, god knows, i do from time to time, if you’re feeling overwhelmed, go see your GP, to discuss options. i imagine that nystagmus is very like MS, in that a good dose of pragmatism goes a long way. I’ll keep my fingers crossed for you.

wendy xx

hi tracey

you’ve obviously had a crappy time, and here is a great place to share it as there are usually other who are able to empathise having had similar experiences. please don’t feel stupid- you have no reason to as you work and look after a family which i know first hand are two separate jobs, AND have to cope with your MS. give yourself a break as it sounds like you’re doing really well.

presumably if you’ve had a critical illness payout you must have put a significant payment on the bungalow- if so that is less to worry about.

the advice from anndelda above is excellent and i think you’ve got to explore these avenues, esp the access to work. you don’t mention the line of work that you’re in but you may benefit from a visit by access to work who can work with you and your employer to make things more bearable.

don’t suffer alone as there are many support mechanisms out there- perhaps get in touch with the MS society who can tell you what they are?

all the best with nice (i.e. non-MS) hugs. fluffyollie xx

oh, forgot to say that i suffered with ON, and have been left with poor balance and occasional double vision. I had to surrender my driving licence and instead have a 3 year one. my opthalmologist says that despite all this i am fine to drive with an eyepatch on, so having eye trouble doesn’t automatically put the kybosh on driving… hope that helps x

Thank you all so much. I haven’t cried for a couple of hours so there is a positive got a banging headache now. I don’t live on the mainland I live in Channel Islands so not sure if some of the options you have in UK will be available to me.

I have faith that my employer will do what they can to adapt things for me if needed.

I actually can’t remember the last time I was so upset. I have to say googling Nystagmus probably not one of my wisest moments as had no one with any knowledge to help put into context.

xxxx

Hello again.

I’m glad to read you are feeling a little calmer now.

Crying heavily is so draining and tiring. I’ve just had 3 solid weeks of it myself.

I am also my own worst enemy when it comes to googling stuff we would be better off not googling!! But we have all this info at our fingertips, eh?

Luv Pollx

Oh Poll, it’s hard.

Typical that today a news feed appears on Facebook talking about someone who passed away from MS.

Im hoping that whatever is going on with my eye goes away. If scan shows anything new then I will be asked to think about changing my meds and that’s a scary thought.

xxx

There is a post, on here, about research into Primary Progressive MS - l think it was from Barts. lts about a new trial for Biotin- lt seems a high dose help with PPMS - and especially for ON. l have ordered some Biotin - not that it will be the very high strength recommended - but it supposed to be good for Eyes/Skin/Nails/Hair. So worth a try. Look for the thread on Biotin.

I’m sorry you’re so scared. I believe people with just one good eye working are able to drive. I have one good and one literally almost blind eye (strabismus related) and am allowed to drive…