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

Everyday living
1

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

2

Hi Fletch I can’t answer your question about rent but maybe I can reassure you a little with regards to your license and job. I was diagnosed June 2012 after an episode of double vision which was corrected with a temporary prism. As a bus driver I was very concerned about losing my license and my job. I informed DVA who contacted neurologist and GP for all my medical records and was allowed to retain my PCV licence on a yearly basis. All I have do do is ensure medical and forms are all returned about 8 wks prior to the expiry date to give them time to carry out their checks. Just wanted you to know ms isn’t necessarily the end of your career. I hope this eases your fears until you get results. Geraldine

3

Hi Geraldine, thanks for your reply,I’m aware of the yearly licence bit,just worried at time of medical the eye could fail it …but who knows,like I said I’ve not been dx yet,so fingers crossed might be ok…but my eye could be fine if/when I’m dx…but cheers Geraldine for some encouraging input :slight_smile: BTW,I’m new to this forum but there were 4 other replies to this thread to which I replied to…don’t know if its because I’m viewing on my phone ATM but they seem to have vanished ! …is that normal on this site ??

4

Hi Fletch, welcome to the Forum. This site is great for support, information and advice because you are able to converse with people that this condition is happening/has happened to. Don’t be worried about your diagnosis, what will happen will happen, and if it does come out as MS it’s not the end it’s just having the next step in life and having to adapt. I’m 51 and have been diagnosed for fifteen years and had various symptoms that have developed but, hey, i’m still here! Good luck and let us know how it goes. Linda X

5

Hi Fletch

You posted your original query twice, Fletch. This often happens either because it was held up for moderation as you are a new user and you, thinking it had got lost in the ether, decided to write it out again, OR due to lengthy internet uploading, you refreshed the page and accidentally posted it twice. (This sometimes happens to replies as well which you may have noticed on other people’s threads.)

If you look at page 2/3 you will see your other post with the other replies. Or you can click on your user name and it will display your recent posts and you can find the other one that way.

Hope this helps

Tracey

6

Hi fletch, Sorry about your situation. If it will help you, I would recommend you pay a visit to the local citizens advice. They will be able to tell you what you will be entitled to under certain situations. You should be able to get some benefits that’s for sure, but they will advise what is available more precisely than me. Sometimes knowledge is the control we need to to get to grips with certain situations. That’s why sometimes it is such a row if to know that all these weird and wonderful symptoms are actually a result of ms and not that you are going funny. The more empowered you can be about every aspect of your life this dx will affect, then the more positive you will be trying to deal a nd adapt with it. It might not seem the case now, and it might feel like the end of the world, but you can adapt and survive financially, it’s just a case of making the choices as to where you can sacrifice certain areas in order to live stress free and have a quality of life. Hope this helps a little J x