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Just been diagnosed

On Monday 23rd Oct i was diagnosed with MS. I am 31 and have 2 lite girls at home with Monday also being my youngest birthday. Although i suspected MS seeing the MRI and the consultant saying those words have totally took the wind from me. I dont know what to do now. He is talking DMT straight away and says the MS Nurses will be in contact very soon. Ive tried researching it all but finding everything like a mine field. I want to stay as healthy as possible for my family and really need some advice on how to achieve this. I also know having a positive mind set will help too. For now im showing no real symptoms apart from my left hand which still has some numbness since it went in march this year and i really want to keep it like that. Sorry for confused post im totally lost in it all.

hey

don’t get in a tizz because you have many more good years to come.

the MS Trust have a very good fact sheet about DMTs.

it is all about weighing up the pros and cons but a DMT will keep relapses away.

make sure you enjoy your little girl’s birthday and enjoy loads of cuddles (best therapy ever).

the usual health advice, such as eat well, keep hydrated, have quality sleep, rest when you need to is very appropriate.

your ms nurse will be able to refer you to other agencies as needed.

don’t try to take it all in at once.

let in sink in

read about DMTs

choose a DMT

one of these per week is good going.

cat x

I was diagnosed on Tuesday. However much you suspect that you have MS being told that you ;definitely do is ‘life changing’…how can it not be? I have decide to just let the news ‘sit there’ for a while. I am not going to rush in and decide how I feel about it just yet. Be kind to yourself and I am sure when you see the MS nurse they will help you through the minefield. In the meantime just do the things that make you happy and concentrate on people you love; Everything will become clear in time I am sure. xxx

There’s quite detailed info on the MS Trust’s Decision Aid tool: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

You basically see what benefits you can get from a treatment as balanced against the side effects. The benefits are calculated from the average relapse reduction rate.

You will find that not all the drugs are available to you, so it’s worth looking at the whole picture, but don’t make your mind up that you definitely want A or B drug until you’ve sat down with the MS nurse to find out what is available in your area and for you specifically.

Carole and Belle are both right, it’s a big thing to be diagnosed with MS. Give yourself a break, allow the diagnosis to sink in. Allow yourself a good amount of self pity, anger and annoyance that this uninvited guest has come walking into your life and the you may find you can feel a positive attitude can be applied to it.

A positive attitude is something that we all aim for. But don’t always have it. After a few days, like you and Belle or a few years like Carole and I there are times when we are positive and times when I personally want to kick the unwanted visitor right where it hurts (in a virtual sense obviously).

Sue

Thanks for all your comments. Ive had a look at DMT but will let my MS nurse go through the treatment plan with me when she gets in touch. Ive had a few days for it to settle in and your right most of time i want to kick it where it hurts!!! I suppose now i need to live with it and adapt where i can. I have started taking some Vitamin D and already doing healthy lifestyle with slimming world. Hopefully next few weeks it will all make a bit more sense. Xxx

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I myself am in the same situation I’m 35 with two young girls recently diagnosed I have been healthy really all my life but recently have had numbness in my hands and across my stomach and had mri scans only to hear that the consulatant has diagnosed ms . I’m in shock really don’t want to believe it ! Waiting to be referred to specialists so will take it from there . Apart from the numbness I have been suffering from pain around my neck on and off for years . It’s a lot to take in and scary at first . I hope it doesn’t get any worse im trying not to be stressed but at the moment it’s hard not to be and always thinking the worst .

I think it is always a shock to hear the words, ‘you have MS’. And don’t expect to come to terms with it quickly or easily. It is just a big worry in the early days. And as a parent you will fear the worst.

But, if you have to be diagnosed with MS, now is not such a dreadful time as it was 10 or 15 years ago. Now that we have effective disease modifying drugs, relapses can be reduced, and their impact also reduced.

There are MS nurses, which many people do end up having a wait to see, but once you are on their radar, it is much easier.

We have all the benefits of the internet, and although we are forever saying ‘don’t google your symptoms’, there are reliable sources of information, such as the MS Society and the MS Trust.

You also have all of us, who understand what it’s like to be where you are, so if you have questions / fears / worries, you can ask the forum members and someone is bound to try and help.

Try not to worry too much about what will or won’t happen in the future.

Sue

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