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A lifetime of MS!

Have just ben diagnosed with MS in March 2013 following several ‘episodes’ over the last year. Both my parents also suffered from MS. We were told at the time the odds of this happening were huge. My Dad was first diagnosed around 1976 when i was 12 and my Mum 3 years later.

Back then, treatment options were very limited if non-existent. My Dad passed away 20 years ago after suffering quite severe progressive relapsing MS. My Mum lived with the illness for 30 years before sadly passing away Xmas 2009.

At various times of my life, i was the main carer for both of my parents and witnessed many tough times and various degrees of suffering and indignity for both of them. After almost exactly 3 years ‘free’ of the ilness out of the last 36, it has come as a bit of a blow to be now diagnosed myself.

I took it really hard at first but with fantastic support from my consultant and the MS nurses i now realise it is not the desperate diagnosis it used to be in my parents day and that treatment has moved on a long way.

Have been lucky enough to be have been put straight on to Gilenya as my treatment following several relapses over the last few months and as a result of my family history. Very early days but feeling a lot more positive and not as fearfull of the future as i was a month or so ago!

Hi Mickmoria and welcome…

How extemely difficult for you. I think you deserve a medal for having such a fantastic attitude after watching both of your parents suffer with MS.

But you are absolutely right. Treatments have come a long way even in the past few years and there is huge amount of research going on right now with new treatments coming along and talk of a cure within 15 years.

You’ll get plenty of support on here. It’s a great forum. Don’t know what I’d do without it.

It is early days and you might find that your emotions will go up and down. Just try and flow with it. One day at a time. And always come on here and express your feelings. It helps enormously.

Take care and look forward to seeing you on here again,

Pat x

Can i ask how you are finding the gilenya? I started rebif last week but ms specialist advised me to go on gilenya instead as i have the rapid type. Ive been given time to decide so any feedback appreciated. Sorry for your difficult times by the way

Oh love, what a blow for you!

Anyone in your situation would struggle to come to terms with this.

But I admire your take on life with MS…and yes, there are much better meds and support now.

Look after yourself.

luv Pollx

Hello and welcome

That is such rotten luck but you have a fantastic attitude. Treatments are so much better now than they were when your parents were diagnosed and getting onto them early is the best way to slow down the progression of this disease. I firmly believe that a cure is on the cards within our lifetime.

There is also much better access to physio, MS nurses etc. Make sure you push for whatever help you need and come here regularly for support and advice. There is a wealth of free information from people who have loads of experience in dealing with the many challenges that MS brings.

All the best

Tracey x

Thanks to eveyone for the kind comments, its nice to know there’s other undertanding people out there.

ThesheriffJW, very early days as today is only my second day on Gilenya, spent the day in hospital yesterday as you have to have your heart rate monitored for the first 8 hours or so following the first dose as the heart rate can drop initially. Was allowed home ok and am now on one tablet a day. Only experienced very slight dizziness so far but was getting that anyway so might not be the effects of the Gilenya! My consultatnt is 100 percent confident that this is currently the best treatment option, at least for myself, and is very positive about its long term benefits. Obviously, like all of the current treatments available, there are side effects but i guess only time will tell exactly what these will be. Back at hospital for a follow up appointment in 4 weeks and have to have regular checks on my eyes but fingers crossed it’ll prove to be worthwhile.

Hope this helps a bit and good luck and best wishes for whatever treatment you decide to go with.

Mick

Hello and welcome Mick :slight_smile: A lifetime of MS indeed :frowning: I’m not sure I’d have coped as well as you clearly are, but as you say, things have moved on so much it’s almost like it’s a different disease sometimes these days. I very much hope that Gilenya works like a charm for you. Karen x

Hi Mickmoria, Wow! I’m so sorry - what a tough thing to have to deal with. You are obviously coping really well with loads of fantastic support. It sounds like the world is much better equipped at dealing with MS nowadays than in your parents’ day. Hopefully, you will have many relatively healthy years ahead of you! Take care, Teresa xx