Hi all,newby here in serious need of some advise please

Everyday living
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Hi all,before i start i have not yet been diagnosed with MS,but have been browsing this site a little bit over the past few months just trying to get a better understanding of it all because unfortunately theres a pretty good chance im about to be diagnosed…

Ive been having symptoms over the last 5/6 years…i had a brain scan about 5 years ago,but that hospital shut down,i had an absolute useless doctors at the time,with a normal 2 week waitting time to see a different doc on every appointment…but my symptoms eased and i didnt bother(or got fed up trying) chasing it up(yep,im one of those who thinks it’ll go away if i ignore it lol) WRONG…!

So since then(more recently) ive had a few different symptoms,ie: numbness from my Hip all down my left side to my feet (leg being the worse,feels like ive got 3 pairs of trousers on that leg) and under my feet/fatigue/incontinance/other mens troubles(which at first i put down to being no spring chicken no more lol)etc etc etc

but my worse symptom at the mo is bluriness in my left eye(which i haven’t had for a few years)…when this all first started i was sent to Morefields eye hospital and after loads of different tests they said i had ‘optical neuritus’,but was never explained to me what it actually is…so the eye got better and i thought no more of it(that bury my head in the sand thing again)

So i now have all these symptoms again,the eye is pretty bad,its worse when im stressed or hot etc,but worse than it was 5 years ago…but ive been appointed a neurologist who gave me another MRI/brain scan and found 3 lessions and said its all pointing towards MS but would not diagnose me then…over the last month he’s sent me for an MRI/spine scan and an EEG/EMG scan and are waiting to see my neurolagist next month for the results/outcome of them scans…

So thats pretty much where im at,the waiting/not knowing is driving me mad…ive tried not to look too far into it but feel now i have to dig a bit further and hope some of you lovely people can give me some guidence…

Ive pretty much accepted the fact i have probably got MS,and theres no reason i can’t live a fairly normal life if so,BUT my main worry is…Im a HGV/lorry driver,i know if i get diagnosed im probably going to lose my HGV licence because i have visual problems,my wife only works part time and we have an enormous private rent to pay each month,i dont know how im going to pay our rent if/when push comes to shove…i have a good job thank christ,which pays pretty well(hence the mega rent and where most of our hard earned dosh goes each month just to keep a roof over our heads)

Dont get me wrong,i’ll be devastated if i get diagnosed and all thats gonna come with it,but i’ll turn my hand to anything and adapt and try to find another career,but im no fool and know how hard it is out there at the mo and am not stupid enough to think im going to earn the same money im used to or the sort of money thats gonna keep this roof over our heads…

My question is,if i lose my career to MS,will we be entitled to any help with the rent? theres only me and the wife in this 2 bed house (which we only have for when the kids/grandkids come to stay)so im assuming its going to be classed as too big for 2 people (which we understand) and if we did get any help i dont think they would not help alot…

So what happens next,would we be elligable for council flat?smaller private accomadation? i really dont know where we stand,and i know its not the most important thing but its whats keeping me awake at night and sending my stress levels through the roof with worry…me and the missus never argue and get on really well,but it is putting a strain on us both and im petrified im going to lose everything…dont really care about this house,just more worried we’re going to be homeless…

Im really sorry to have gone on a bit,and for my terrible spelling(hence why i drive for a living lol)but ive got no one who can advise me on whats next if i get diagnosed,if any of you who have actually not fallen asleep reading me go on and have been in a simmilar situation regarding housing/Hgv licence or any of the above i’d really apreciate your advise…

THANK YOU for taking the time read it…Fletch x

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Sorry I can’t help Fletch but this should bump you back to Page 1. Hopefully someone else will see your post and be able to advise re housing and HGV licence

Re the MS, there is life after diagnosis, as you have mentioned we just have to adapt. Good luck

Tracey

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hi fletch

i used to be a fletcher before i got married. good name!

all my fletcher relatives look really good for their ages.

perhaps you should see your local council about housing, at least you’ll be on the waiting list.

dont worry about spelling, i used to be a grammer nazi but now i dont even punctuate.

in preparation for your neuro appointment you could look up the different DMDs (disease modifying drugs) as you may be offered one of them.

good luck

carole x

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Hi Fletch,

It’s a very worrying time for you to be facing dx and all that it entails.

You have highlighted a couple of problem areas – loss of income and housing.

It would be hard for me to answer those specific issues within the scope of this post but I will give you very broad strokes to point you in the right direction so you can research in more detail.

If you are no longer able to do your job you will need to enter the benefit system:

Employment Support Allowance if you are too sick to work.

Job Seekers Allowance if you could still work at something– albeit not as a driver.

Working Tax Credits if you find that you can only do part time due to your illness (16 hours if you are disabled or over 60)

There is another benefit that you could look into if you are working or not Personal Independence Payment

Then we come to your housing. If you are on a low income you would apply (to the local council) for help with rent and council tax. You will have read a lot about the spare room tax – this will limit the money that you could get towards your rent and you are quite right that you would be assessed as needing only 1 bedroom for a couple.

You can apply to your local council and or housing association for social housing. In my area unless you have some kind of priority (medical need for example) the wait is very long. Demand generally far outstrips supply so although there is no harm in applying I think you should also look at smaller, cheaper private options.

Please don’t worry about homelessness. Easier said than done I know but a dx of MS is not going to put you in a cardboard box under a bridge. Many of us have had to accept radical changes in our standard of living when good salaries turn into benefit. I live on very reduced means but I’ve got a roof over my head and food in the cupboard so it’s not all doom and gloom – just different.

Please feel free to PM me if you want more detail about anything as you travel along the bumpy road ahead.

Jane

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Hi Fletch and welcome,

This will tell you about ON http://www.mult-sclerosis.org/opticneuritis.html

As far a Council Cave it depends on your area; I take it you have your name down and don’t worry about telling them about your health; more points.

Yes you would be eligible for some sort of help with your rent but this depends on lots of things. I suggest you put in for DLA which will soon be PIP; ring 0800 882200 The Benefit Enquiry Line they will send you the forms and if you are successful your payment will be backdated to this phone call.

Don’t worry about spelling; I was just admiring your punctuation and the way you set the message out. At least you used paragraphs; so many don’t and it is very off-putting to look at one large block of text.

G

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Tracey/Carole/Jane and G…thanks a lot for your replies …gonna try to stop stressing so much…some nice bits and bobs there to look into,gonna look into getting our names down on the housing to start with(ya never know) and fingers crossed…good or bad I’ll let ya’s know about my dx next month… Thanks again…Fletch x