hank 31/12/16
Last reply 1 year ago
HOPE FOR THOSE RECENTLY DIAGNOSED

hi ,i have been diagnosed withP.P.M.S. for 6 years now, i accept at first it does seem terrible, but remember it is life changing, not life threatening, i am still working 4 days a week , but in a very different type of job, i now work in a call centre, where i am sitting down all the time. If just diagnosed you are probably not showing many symptons , so perhaps now is the time to realisticly look at the job you do now, will you be able to do it in the future ? if not now is the time to look around and find something you will be able to do. I would not still be working without the help of my very good employer a very good housing association who have put things inplace to help me. By my experience , if applying for a new job , dont mention M.S. , although in therory if you are disabled you can claim an automatic interview this dosent happen in practise, go for the interview , get the job and declare later down the line after 2 or 3 years and if you are lucky like me with a good employer they wont get rid of you whilst you can still do the job and by that time you wont want to carry on. REMEMBER IT IS LIFE CHANGING , andlearn to adapt, there are lots of advances being made all the time lets hope 2017 is the year for the big breakthorough in M.S.

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Anonymous
1 year ago

Oh @hank thanks for your post above but in conjunction with your PIP assessment post in another thread, I’m not sure how much hope this gives me 🙁

I’m the main earner in a highly specialised career which I love and we have no family anywhere nearby – mine is not even in the same country.

I received my diagnosis in late September, had a relapse just now in December. So many people have been telling me they know somebody with MS and that ‘they are fine’. But actually, not being able to work and having to apply for PIP does not at all sound ‘fine’ to me. For me and my partner (and the child we were hoping for), this sounds pretty much like a ‘I am Daniel Blake’ scenario.

Really struggling with this and had high hopes because people said they know lots of MSers who are fine – but omitting to mention that most of them are too disabled to work.


hank
1 year ago

the really important thing to remember is M.S. affects everybody differently , i have P.P.M.S. which sounds different, i think you have R.R.M.S. if you had a relapse, there new treatments for your sort , unfortunately my sort at present there is none , and mine just gets worse year by year, so you may be fine for a long time ,i hope so , it is a shock when first diagnosed , because eventually it does change your life but you are young and they are making great strides in finding a cure, it will be in time for you but probably not me, but its about keeping a good attitude


naomih
1 year ago

If it helps at all, my best friends describe me as “just fine and not having any issues”. Haha haha …if only!! they really haven’t a clue as I don’t bother telling anyone the gory boring details!! However, if mris were available when I was in my teens I would have known 20 years, 2 children and a whole lifetime ago. Don’t pay attention to anyone else’s 3rd hand descriptions as anyone else other than you is utterly irrelevant. ?


cameron
1 year ago

@thoughtfultraveller, I have found that a lot more depends on your way of managing than you might think. Have you got the best neuro team? The right drug, the right monitoring, the right exercise regime….. changes the game. Obviously (from the background you describe) you’ve got plenty brain reserve – that’s a big positive. If you need help with your mood, take it. xx


vicy
1 year ago

Don’t forget that ms is an invisible disease, other people can’t see it usually. For myself, on a good day you wonder why I have a blue badge, on a bad day you wonder why I am struggling to walk & not using a wheelchair.
Good luck all newbies.


Anonymous
1 year ago

Thank you all for your encouragement – I think I’m at the point where the enormity of my MS diagnosis is sinking in, because of the relapse.

@cameron, I’m in the process of getting my ducks in a row with managing MS. I’m planning to make 2017 the year of sorting out treatmement etc. and deciding on life plans.

It seems many MSers stop working relatively soon after diagnosis, sometimes because they think they need to but also often because people around them advise them to do so.

The biggest predictors of future employment seem to be that the job is not a physical one and you want to keep working. Maybe not all doom and gloom then but there are just times when I’m loosing my mojo a bit.

Thanks for all your advice xx


Anonymous
1 year ago

I was diagnosed 2 years ago with ppms and it has taken me down pretty quickly.i have lost most use of my legs and my left side is extremely weak. I also have severe fatigue and i am unable to work. This disease is very different for everyone. So great. Job for being able to work yet you are very lucky.


cazzzzzy
1 year ago

@hank … Nice to read a positive post! Good attitude to have!

I just wanted to say that although there are no meds out there for us PPMSers yet, I have been following a strict diet for nearly 4 years and my latest MRI has shown no progression, I was progressing at a fast rate and needed to do all I could to slow things as much as possible, I found diet works!!!

Best wishes xxx

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