Forum

Please let there be hope

Evening All

Sorry to dampen your evening but I need some thoughts please? I think I may have been trying to keep a brave face on everything for too long and today there have been tears and I would be lying if I said I’m not scared!

i was diagnosed in 2011 came as a complete shock but Drs are now saying a head rush sensation in 2007 was probably the start although the brain scan in 2007 did not show anything. I have been on Avonex since Aug 2011 and providing Tecfidera is added to our prescribing list I will be moving.onto Tecfidera.

I have Nystagmus in left eye which at the moment is freaking me out. I work, drive and have two daughters aged 11 and 7 who still don’t know about my MS. I think they now need to know so they understand why Mummy is sometimes very tired and why there are times when my arm and leg don’t want to behave.

The last few days I have had bad aching around the eye which hasNystagmus and have got myself in a state worrying that I will loose sight, driving license and won’t be able to work. I keep on trying to tell myself that medical science is moving and one day our lives might be a little easier. I just feel like a lost cause and I don’t know anyone personally with the condition who I can turn too locally.

Has anyone else had the dreaded task of telling their children or felt like me and can offer some thoughts of how I turn my thinking around?

Trace

x

Hi there is some excellent reading material on telling your kids on the Ms trust website.
Also on facebook lots of support groups with friendly people and some one will be in your area.

IT’S my wife that has MS and its me that pushed to tell kids and family and friends as secrets just cause stress and my wife does have her head in the sand which she admits and like works and is scared. we told our children so at least the little ones know there is a reason mummy is tired and some times needs to looked after. my old children previous marrige got upset but they understood and made them closer to stepmum

Look at where MS medicine was 10 years ago hopefully in 10 years more Ms won’t be so hard to treat hopefully cured. Find so local support we are in surrey. Send me private message if you like. Don’t let it beat you

1 Like

Hold on Trace, it sounds as if you’re in danger of passing on your anxieties to your children. If you’re anxious/worried then they become worried.

The symptoms you’re experiencing now will settle down and when you’re calmer then you can decide whether or not to tell the children.

I’m probably in a minority but I don’t think it necessary to tell the children until they ask what’s wrong. And then it my be simpler to say something about nerve problems.

it always concerns me when parents say their children have accepted things when they’ve been told. The fact is no one knows how a child will react.

Hi Trace

I’ve not got kids myself so don’t have any personal experience. However, I think they can be surprisingly perceptive, and can pick up on things. My brother was also diagnosed a few years ago, and his three kids (all under 10) clearly knew that something was up. In terms of general emotional support for yourself, it’d probably be worth getting in touch with your GP to see what services are available to you, such as counselling or Cognitive Behavioural Therapy (CBT is good for things like anxiety).

And regarding your worries about driving & work, I don’t have nystagmus but I do have optic neuralgia in one eye, meaning the vision in that eye is quite cloudy & I can’t read with it. However, the DVLA know about it & have passed me fit to drive. (Have you told the DVLA yet about your diagnosis? If not, you need to as you’re legally required to. Will insurance company need to know too, though they’re not allowed to increase your premium.) Get in touch with Access to Work too. It’s a DWP service to help people with disabilities to stay in work, and they could be a very useful source of help.

Dan

1 Like

Thank you. Yes DVLA know and I now have 3 year licences and the insurance company know. I have a field of vision test done every year and see an eye Specialist each year due to having pseudopapilledema which I have had for years. I reach a certain time of the year and my check ups all seem to occur and I feel like a performing seal!

I think it’s really important to be honest with your children. I also think it’s easier to tell children when they’re young enough to take the information at face value, before they will start to imagine futures which may never happen. I would look at the MS Trust stuff.

For yourself, would you think of going to a local MS Society group? Sometimes meeting other people who are having similar experiences can be a real help.

Hi Trace,

This may be a little bit of a comfort to you …when I was diagnosed back in 1998, one of my first symptoms was nystagmus in the right-eye.

This never stopped me driving, and I had completely forgotten about it until a GP report to the DVLA a couple of weeks ago mentioned it. In fact, the only times it has been observed have been by medical professionals during examinations.

I haven’t lost any vision or had any problem with it at all in 18 years, so as far as I’m concerned it’s just a word written on a piece of paper once in a while. It has no impact on my day-to-day life !!!

So, it can be totally innocuous, but as this condition could be different (more severe) for others, I suppose the DVLA would have to be prepared for all sorts of possibilities ?!

How does it affect you ?

Dom

On a practical point; have you seen anyone about practical help with the nystagmus?

I have nystagmus and have prisms in my glasses prescription that really helps. A good optician (accent on the good) will be able to sort this out without waiting for a NHS opthalmic appointment.

Hi

We don’t live in mainland UK so not sure what is available locally for Nystagmus. Apart from being made to feel like rubbish by one Optician luckily after moving to a different one I felt a little better. I’m not sure if there is anywhere for me to go locally re the Nystagmus apart from someone mentioned the Blind Association. I am due my field of vision test next week and the following week I am seeing a locum Ophthalmologist who has hopefully dealt with this condition and might be able to offer some further reassurance.

Sorry for the negativity but I’m feeling at the moment like I’m ready to be scraped. Those of you with Nystagmus it’s great to hear it’s not the end of the road and that there may be things available to help. At the moment I haven’t been offered anything in addition to my normal glasses, maybe Tracey should just ask and stop worrying about the ‘What Ifs’ as surely I am making things worse for myself?

Thank you all for replying.

Tracey

Hi you`ve had some really good replies…from people who have been through the same as you.

I do think your children would be better being told by you, that you have a condition which makes you ill.

There`s no need to go into great detail,as you dont want to scare them silly.

luv Pollxx