After weeks of lurking I have just made my first post on the Newly Diagnosed forum - it felt that was the right place for my first post.
But as I have been diagnosed with PPMS I thought I would also introduce myself here.
I am in my 50s and have had symptoms for 6 years. Diagnosis made after borderline brain MRI, negative evoked potentials but positive LP and clear clinical indications. Have found the neuros and MS nurses to be great in my area and there is also an MS Therapy Centre which offers a range of therapies at reasonable prices - so I guess I’m pretty lucky. And if this had kicked in when I was in my thirties say with a couple of young children I don’t know how I would have managed. But I guess I would - what else can you do?
Looking forward to contributing further in the future
l to am in my 50s and l am learning to live with MS you are right we just have to get on with it as thats all we can do.
I go to our ms drop in we have a good laugh with the gang and have therapies the feet ones are the best. We get out for trips xmas do is coming up soon thats all ways a good day l take the rest of the family along.
Hi Hilary, I’m 58 and was diagnosed ppms in 2008 after a few years of mild symptoms. Then the fatigue kicked in big time. Also count myself lucky that I didn’t get it when I was younger. Takes a while to get used to getting your diagnosis but great that you’ve had such good support. It’s so helpful to be able to come on here too for advice, help, support and the much needed friendship of others in the same boat. I’ve learnt nearly everything I know about MS from fellow MSers on here.
So welcome and look forward to seeing you on here.
Just to illustrate the fantastic support I have had here is an extract from an email from a friend/work associate following my disclosure…
"I have read your email about five or six times now as your news sinks in. I apologise for taking a few days to get back to you, but each time I sat down I was not able to make a start until now. I have been worried about you for a while and knowing someone who received their diagnosis of MS last year, my concerns were along those lines. …
Clearly you will be thinking about your future work and my personal hope is that I get to work with you for a long while yet. You have created something special with xxxxx and there are plenty more people who need it, and you!
I know you will have a good bunch of supporters over the coming months and years. It would be a privilege if you could include me amongst their number".
I was really moved by this - I guess you really know who your friends are when something like this kicks in.
What a lovely friend you have! You’re right you do find out who your true friends are in our circumstances.
I was diagnosed in September after going to my GP in April. My balance and walking had started to deteriorate, After mri, LP, the usual prodding and poking and listening to my symptoms over the last year I was told I have PPMS. I’m 45 and am now going through the process of medical retirement. After initially being upset I am now relieved about work as something like this makes you look at work life balance. Friends and colleagues have been great and have offered loads of support.
You’re always welcome on here, there’s always someone with a friendly word/advice and will know how you’re feeling.
I agree with Sarah about having to give up work. Couldn’t believe it at first but now, nearly 6 years later, I know it was the right thing. My fatigue is too bad to work and now my mobility is not good… but you know in many many ways I love my life. I don’t do a whole lot but books, films, music, friends, family, even sitting looking out the window, trees, birds… all make life worth living (sorry I’m sounding a bit like a made-for-daytime-tv-movie… YUK but you know what I mean… life with MS can be good).
Welcome to “our gang” its a smaller group but lovely friendly helpful people. Sounds like you have a really good friend at work, this is the time when you need your friends, but also a time when you find out who are your real friends.
You say you dont know how you would have coped with this younger, but believe me, you would. I was 29 with 2 little ones and you do cope (somehow) because you dont have a choice, but yes it was really hard at times. I managed to work for a couple of years, and although very upset at the thought, had no other option but to give up. Now I know it was the right decision, but at the time I was devestated.
Anyway that was yonks ago, my children are grown up with little ones of their own, who give me so much pleasure. Its a shame I cant bottle their laughter and sell it!
I am not ready to give up work yet as I love what I do and have already adjusted my schedule to work at home more frequently.
I have my appraisal tomorrow when I will break the news to my boss (though he and everyone else knows I have something wrong with me) and will discuss what other reasonable adjustments I need or may need in future. I have quite a lot of bargaining power as I generate a lot of income for the organisation. I plan to review the situation every few months and am lucky as I know that it will be my decision when to call it a day.
My friends are very important to me and they have all been great but it’s nice to know where to come to chat to the only people who really know what it feels like - so thanks to you, my new friends.
And now I am going to limp off to the gym for a quick half hour’s exercise. It’s only a 5-minute walk away - even at my pace - so not too bad.
How often it seems that ppmsers are diagnosed later on in life. I was diagnosed at 50 and am now 60, still walking, with a stick, and terrorizing the villagers as I race round the village on my scooter! You sound very upbeat and determined to get on with your life despite your diagnosis and that’s great to hear.
I managed to work until I was 58 and would have to have stopped then even if we hadn’t moved away, it had all become too much. I expect you’ve heard of Access to Work who can help with the adjustments you may need at work. They are definitely work contacting - without their help I would have had to stop years before I actually did. I think it is important to continue working as long as you possibly can.
How often it seems that we ppmsers are diagnosed later in life. I was diagnosed at 50 and am now 60. I’m still walking, with a stick, and I terrorize the villagers as I race round the village on my scooter. You sound very upbeat and accepting of your diagnosis which is good to hear.
I managed to work until I was 58, and would have had to stop then even if we hadn’t moved away. You may have heard of Access to Work who can help you with the adjustments you may need at work. They are definitely worth contacting - without their help I would have had to give up work years before I actually did. I think it’s important to keep on working as long as you can.
Welcome on board the ppms train - it’s good to have you here.
Also diagnosed in my fifties, fatique made it impossible to continue my job that I loved. I try not to think about PMS but it’s not easy however I’m going to wobble out to lunch in the pouring rain because today I can!!!
Just getting back into the swing after a few weeks off - sounds great except I came down with a stinking cold and cough just before Christmas which I couldn’t shake off. How come I can be so stoical, even upbeat, about my MS diagnosis but a totally self-pitying wreck when it comes to a simple cold? Anyway all gone now so looking forward to starting the new year as healthy as possible.
January is my least favourite month so my aim is to look for Reasons to be Cheerful (remember the Ian Drury song) every day. Here are a couple of reasons for me to be cheerful which are also side-benefits of having MS:
I won a makeover prize including a £250 shopping voucher and a champage lunch from a local newspaper. I gave the reason for a makeover as the need to re-think my wardrobe as, due to walking and balance issues, I can no longer wear heels (not if I want to walk anyway). Had the lunch but still to spend the vouchers…
having ‘come out’ to some friends that I hadn’t seen for a while (I really know how to spoil a chum’s Chrstmas) I am now seeing 2 of them for dinner during January and hope to catch up with couple more later in the year. One of these is a mate I haven’t seen for about 7 years.
still working but finding the housework even more of a challenge with extra fatigue from MS, so finally got round to finding a cleaner. AND my husband daren’t moan about the expense 'cos of the MS - hee, hee.
Hi Hilary, nothing like finding the advantages of MS! Yes remember that song ‘reasons to be cheeful’… brilliant!
Today my reasons to be cheerful are: Sainsburys are delivering my groceries in a while… fab… all I have to do is put them away (oh and eat them…) AND I’m going to a 4.15 showing of ‘Girl with a Dragon Tattoo’. Meeting a friend. I can take my scooter…using wheelchair lift… right into the cinema… AND by showing my Freedom Pass I get concession. Actually the concessions are for over-60s only and I’m 58 but the young people there just see ‘old woman on mobility scooter with Freedom Pass’. Te he.
Yes indeed here’s to 2012… and your lovely post reminded me that I have many reasons to be cheerful. Thank you…
good day to you Hilary, tell the truth now, you wanted to post on here because you’ve joined the elite and wanted to boast, nothing wrong in that, anyone can get MS but we’re special (so the wife tells me) we have PPMS, so let us all be happy and sing, if you’re happy and you know it shout, we are, if you’re happy and you know it shout, we are, if you’re happy and you know it and you really want to show it, if you’re happy, SHOUT, WE ARE, brian
Poll, I live in Reading though as we speak I am in a hotel room in Liverpool. Good to be up in the North West again- I come from Manchester originally. Where are you? Hilary x-