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Just found out

On thursday i was finally diagnosed with MS, and i have no idea how to feel or cope with it?  Waiting for an appointment with a ms specialist, but at the moment one minute im fine, then im crying my eyes out.  Im 29 with 2 children aged 5 and 18months, and im petrified. 

Hello Soph x 

I'm so so sorry this has happened to you xxx your emotions are bound to be off the scale at the mo so be kind to yourself - there are no set 'rules' as to how you should or shouldn't feel or behave - it's early days for you and I know that there are lots of people on here who will come to your aid with lots of practical & emotional support and advice xxxjenxxxx 

So sorry to hear about your DX of MS. I think it's worse when you have young children to look after. I am currently going through the rigamarole of tests and scans etc but MS is highly suspected.

Even though I have have prepared myself for the worst (MS DX) I don't know how I will cope if it turns out it is MS. I am still hoping it's something much less severe and treatable.

My children are 12 and 14 so not as young as yours. I don't know how I would cope if they were younger.

I think it's also quite normal to go through the grieving stages and being terrified about your future. Your feelings will be very mixed right now. Allow yourself some time to let this sink in and you will find a way to deal with it your way.

Do you have a good support network around you? I think that can help enormously.

Hi.

I’m a bit of a lurker on here at the moment as I was only dx’d two weeks ago and I’m still coming to terms with things, but I totally understand how you feel. It’s scary not knowing what the future holds, especially when young children are involved. I’m 32 and I have a 4 and 2 year old and I’m petrified about how I’m going to cope during the bad times.

I just wanted to show you some support and say you really are not alone if you want to ‘chat’. Expect your emotions to be all over the place for a while, but eventually a feeling of acceptance will take over and you’ll learn to adapt to your changing life.

Emma x

I was 33 when I was fully diagnosed (32 with "probable MS") and my kids were 4 and 7. Like you, I was terrified. It's hardly surprising when all we know about MS in the beginning is wheelchairs and (when you're my age!) Jacqueline Du Pre dying of it. The fact is that MS is not all about wheelchairs (most people don't need one) and hardly anyone gets such a severe form of MS and even if they do, there are brilliant meds available these days to keep it in check.

The reality of MS for the vast majority of us is that, yes, it brings challenges that we would certainly rather not deal with, but that life goes on relatively normally. It is still perfectly possible to be a brilliant mum, wife, friend. It is still perfectly possible to live a long, happy and productive life.

MS is NOT the end of the world.

Of course, it took me a while to realise this - it's not so easy in the beginning to believe it. So take your time; one day at a time. You will get through this period, and it will be OK. It really will.

Karen x

Hello Soph, just to say that I'm there too.  I'm older, 44, but my daughter is only 5.  I was told nearly two weeks ago - I think for the first week I was a bit of a zombie, went to work carried on trying to say this is fine.  Then I crumpled and cried for 3 days.  My GP gave me diazepam and I spend a day sleeping and now, while still wobbly and truely frightened I'm doing my best to remember to be positive and live in the day - my daughter will give me the strength to deal with this, I will do everything to keep her life good and that means that mine will be too.  Thinking of you xxx

I'm also 29 with 2 children 4 & 11 my gp suspects ms I'm having my first nero appointment on wens I have been worring about it as I've been waiting over 2 months for this appointment.

I have just come to the conculsion that I can't really do anything thing about it and I'm wasting my day's worrying and trying to be positive and thinking it's not the worse thing i can get.

But if they do diagnose i expect i might feel diferent then I hope that i keep my frame of mind, But I hope that you get comfort from knowing that there is people on here you can talk to when your feeling down and to other support.

mel xxxxx

Hello from me too. It will take time to sink in but the nhs wheels turn very slowly so expect to wait a long time between appts...it does give you chance to take stock between each visit though.

Reading through the posts on here you will see there are plenty of people to hold your hand and guide you through the process...and to rant ,rave, moan,cry and laugh with.

Take care

Pip

Hi Soph, I was DX 6yrs ago aged 47, and yes at first you are all over the place, but given time, and more understanding of the condition you will start to settle down, I completely agree with Rizzo, life does go on, maybe not just the same as before, but you learn to adapt, pace yourself, and enjoy the things that are more important to you, ie family, which to be honest we don't always do when things are ticking along nicely, and not everyone is affected the same way, so it's not set in stone that you'll end up in a wheelchair, however that's how we all think at first, so be kind to yourself and give it time to sink in, not only for you, but for you're family, take good care, and just remember we're all here for each other, Luv Jean x

Thank you all so so much. Even though my family and friends have been great, I’ve never felt so alone?? But hearing you all has actually a but of relief.
I don’t really know what to do next? Is there anything I can do to help myself? Any advice? At the moment I’m suffering from a lot of pain in my legs and arms? It’s a strange feeling that I don’t really know how to describe? I suffer from numbness and pins and needles a lot. It’s annoying but I can deal with that. I also feel like I never any energy??
I run my own business making cakes which I love, but am struggling with at the moment.
Thank you all again, it’s nice to hear from people that understand x x

I'm a cake decorator and first noticed my tremor when decorating my son's 12th birthday cake in Feb this year. I usually have a very steady hand and do lots of intricate work with fine piping tubes. I don't know what I would do if I lost that ability. But, I am also new to this and probably thinking the worst but I am learning every day that it is not all doom and gloom.

 

 

Hello Soph,

Just one little tip, listen to what your body tells you. If you feel tired then rest then do a little more then rest again.

I have to have a rest every day for at least a hour then I can keep going. You'll soon get the hang of it but do take notice of your body.

Sorry that you have now joined the MS club but welcome all the same.

Janet

x

[quote=“rizzo”]

I was terrified. It’s hardly surprising when all we know about MS in the beginning is wheelchairs and (when you’re my age!) Jacqueline Du Pre dying of it. [/quote]

OMG. I am focussing in on this now. Someone actually DIED from MS?? :((

Hi soph. so sorry to hear. I got diagnosed 2 days ago myself and am exactly the same. i cry randomnly then stop and start. ts lke someone has died! I do not have any kids and am 26 so can imagine it must be tough for u. I would say that ive been given geat advice one of which is let urself feel the emotion and dont hold it in. will help in the long run.

 

I am suffering with optic neuritis atm and am blind in one eye so am v scared. back to my neurologist tom morning to discuss treatment for ms and he can look at my eye. he assures me my vision will come back but its awful losing sight so quickly.

 

hope ur ok xx

Hi Beccy,

Oh I’m sorry to hear your news, I suffer with a lot of pain and blurred vision but I haven’t lost it yet.
Hope it all goes well for you tomorrow. My mums friends daughter had the same thing but as soon as she got the right medication he corrected it self. Try stay positive - coming from the blubbering mess haha!

Hope it goes well.
Sophie x

haha ahh bless ya.  i wont get meds as i was realllllly bad on steroids last time. almost killed me! had a horrible reaction to them so he wont put me on them....its a waiting game for me unfortunately.

will keep u posted! x

haha ahh bless ya.  i wont get meds as i was realllllly bad on steroids last time. almost killed me! had a horrible reaction to them so he wont put me on them....its a waiting game for me unfortunately.

will keep u posted! x

Hi Sophie and welcome to the club! It’s congratulations and commiserations at this point.
Commiserations because I’m really sorry you have got this news and congrats because you know what it is and so can deal with it with support.
I am older than you… 41, and also have 2 children 8 and 9. I was dx this year but I can go back almost 20 years to my first symptoms and my neuro says my brain patterns would almost tell that story!

I am a very practical person so forgive my post if it seems cold. Now that you have your dx you need to inform the Dvla. There is a form on the website, it’s very straight forward and they will write to you to let you know they have received it. They will get in touch with your neuro and then probably issue you with a new licence that will need renewing every 3 years.
You also need to let your insurers know of your dx, they cannot increase your premiums but mine put ms on the medical conditions of my policy. If you don’t do this they can wriggle out of future payouts on the policy.
If you have a mortgage or any life insurance policies then check them for critical illness cover. Ms is on the listof critical illnesses and you may be able to claim. A lot of policies have a time limit so you need to look at these as soon as you can.
Finally, let the staff at you children’s nursery or preschool know about your condition. They can help out with lifts to and from on the days that your not at your best.
Finally, listen to your body! As Karen says, ms is not the end of the world! If anything mine is better because it has allowed me to give up work and really enjoy my kids, I have lost friends, but looking back they weren’t very good friends anyway but my social circle has opened up because of my ms. I have met some great people and have realised how lucky I am.
Good luck and take your time, one day at a time until you know your ms, because each one of us is different!
Love,
Chis

So much good advice I can’t add much more. I was diagnosed sept 2010 and was devastated. Not sure I’ve reached the acceptance phase. I remember I cried so much. I have cried in every toilet at work - and there are many. Then washing my eyes to try to disguise my crying. I have chosen not to disclose my ms to work. This is because I do not need any reasonable adjustment. Crying at home too I was so upset. Previously I wasn’t a one to see my gp. After diagnosis I used to make an appointment every week whether I felt I needed one or not because by the time the appointment came round I would need one as another problem would have arisen. A good gp is essential - mine is great she admits she knows little about ms but really looks into and researches anything I ask her. One other really important thing is to write everything down - unless you have a fantastic memory. I have a diary specifically for symptoms. Write questions down for your gp, neuro or ms nurse and make sure you write the answers down at the time before you leave the appointment. I’m always referring back to the answers I have written down.
It takes time to cope but does get easier
Thinking of you
Minxx

What a lovely bunch you all are. I’ve felt so alone even with lots of support from family and friends. But its nice to hear from so many in the same situation.
I was told by neurologist that I had ms, and now I’m waiting for an appt with an ms specialist, which no doubt is going to take another few months, but could anyone tell me what to expect? Will he do more tests? Put me on mess for the pain? Not sure what happens next??

Is it true that stress/lack of sleep can cause pain? I have been in awful pain with my legs, arms and hands the last couple of days. Does anyone else get that?

X x