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Please Help - Whats my next step

Hello - I got optic neuritis about 7 years ago , After around 2 relapses per year since then with just fatique the main issue usually wearing off after a week or so , I was diagnosed with a third lesion on my latest M.R.I scan .

My latest relapse was a new experience with balance and fatigue combining which happened on the 2nd May 2014. After seeing the MS nurse , she put me on 5 Days of medrone Steroids which ended a few days ago , Now I’m in a state of limbo with me still feeling pretty much like i did when i first encountered this last episode on 2nd May , My question is to any helpers out there , Where do you think i should go from here as i feel very low / Lonely and frustrated at the moment .

I have also been to the jobcentre plus to register for income help as i haven’t been able to work since the 2nd May. I was given a free phone call to speak to a guy about E.S.A in Glasgow, I Gave him a load of answers which took about 40 Mins to fill his online form in. He told me i would be sent the forms where i would sign them as a true account and then he told me to return them with my docters sick notes which would then maybe get me some benefits (Correct or Not) Any helpful suggestions would be very welcome, All this is a really new experience for me so i would really appreciate any advice from anyone whos been further down this road than i have currently gone .

Thanks Steve , newgolddream19.

hi steve

has the optic neuritis gone?

as far as balance goes, you need to take things slowly so that you dont end up face in the floor!

i got a wii fit with balance board when first diagnosed (my balance was rubbish).

it really helped me to be aware of my centre of gravity - oh my word! it was so bad no wonder my balance was rubbish!

has your ms nurse got any further advice?

good luck with ESA. if you have no luck - definitely appeal!

carole x

Hi Steve,

I’m sorry that you are not feeling too well at the moment.

On the ESA front: This is a very complex benefit and it takes a good deal longer than 40 minutes to fill in the form correctly. I would never advise doing it on the phone because it doesn’t give you enough time to reflect on your answers. However – you’ve done it now so we need to look at what happens next. When the online form comes for you to sign if you are not happy with the answers – redo it. You can download the form just google ESA50

If you submit it and are denied the benefit – don’t think this is the end of the road. You can first ask for a reconsideration and later an appeal

I would advise the Benefit and Work Website (£20.00 p/a) where you can find lots of guides to ESA and PIP. (I think I should ask them for commission I recommend them that often) You should look at PIP if you don’t already claim DLA because you sound eligible.

It is not unusual to feel low and frustrated when the beast causes us to stop working. It takes time to adjust – but you will.

Jane

Hello carole

The optic neuritus passed after 2 Months way back in 2007 but had to get a high viz brick line to see where to lay the bricks as i’m a builder.

As i say this is all fairly new to me as the balance has’nt been involved at all before ,

I have no problems in a car driving as remaining still in a car is terrific , its just when i get out and embrace other tasks which involve handling duties.

I wonder does anyone out there think it may be worth me contacting my ms nurse to see if there is any physio help which may give me a slightly different look at possible exercises which may help.

On the medrone tablets , my ms nurse did say they will give you highs and lows which is what i’ve experienced more notably since stopping the dose two days ago.

I have another apppointment with a different neurologist on 14th june , Anyone think of anything that would help me to ask him.

Better go now , here comes my 10year old little girl ,shes just got back from her grannies house.