Last reply 5 years ago
I'm new…

Hi all,

I’m sure you’ve read this a million times, but here I am…a newly diagnosed 23 year old woman. I was diagnosed about 10 days ago, and think it may be starting to settle in now.

I had a few weeks of facial numbness last year, which passed without much issue other than my confusion about how weird it was. I just carried on with little thought until recently; I woke up and couldn’t stand or feel my entire right hand side. I was convinced I had had a stroke in my sleep – terror. Some hours later when a stroke was ruled out, that little word MS which I hadn’t even thought about since my face returned to normal appeared in my mind. Many hours were spent reading about it in my boredom at the hospital (as well as many hours staring at my foot desperately trying to make it move!); by the time the doctor came to his diagnosis I had already processed the thought.

I am stilling hobbling round at home now, with numbness still throughout my right side. My arm feels like it it working against a ten tonne weight – typing is a whole new game!

I’ve read a lot of dispair about MS in the last week, and really could do with an injection of positivity. I am tackling this one hurdle at a time – step one is get this foot moving. Step two, well I guess that begins whenever this MS Nurse meeting is arranged. I hear she will become my new best friend?

A whilrwind for sure, but modern medicine is amazing – positivity is the key, surely?!

p.s. Guess who wiggled their big toe today?! PROGRESS! 😀

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5 years ago

Hi, @shulla, you’ve come to the right place, although I’m sorry that you’ve felt the need to find us.
It seems that you’ve been on a bit of a whirlwind journey to diagnosis. It might not seem so, but that is a bonus, when you read some of the long, drawn out stories of people still awaiting a diagnosis.
So, let’s start off by mirroring your positivity. It’s a diagnosis of a medical condition, which is manageable. Tales of despair are just that, tales. You’ll find a different view from the members of this forum.
Yes, MS is not yet a curable condition, but it is treatable and, as I’ve said, it’s manageable. You already have the required Positive mental Attitude (PMA), so what else do you need? Well, you need to look after yourself. A healthy, balanced diet does the trick, but also, be kind to yourself. MS is the body’s way of saying you’re over-doing it. You’ll need to hear these messages from your body and take note.
And, also, try and banish stress/worry from your life (What? It’s 2013 and we’re in a big recession, I know!). MS gets stronger with stress and worry, so try and adopt a chilled out lifestyle.
By the way, a diagnosis of MS is normally the starting point of a range of emotional phases, which culminate in your acceptance of your medical condition. This emotional journey can take a year to complete.
So, hold on tight, this could be a rollercoaster ride for you.
But, kick off your shoes, put your feet up and have a trawl through some of the current issues being discussed. Add a comment or start a new post if you have a question. You’re not alone here and we do understand how you’re feeling.

5 years ago

Hi Shulla, welcome to shift and for sharing your experiences. You’ll get loads of help here, but I see you are already putting into practice one of the most important things – positivity. You’re absolutely right, your MS nurse will be your best friend and in the future you may also come to love your neurophysiotherapist! On this site you can read about loads of folk who have got their lives back and are living well with MS. This is everybody’s goal – and provided you get the help and support you need, it will be true for you as well. Big hugs and keep us in the loop xx

5 years ago

Thanks guys.

Already been told by the neuro that he doesnt think this has quite hit home yet, and that i will find a ‘wall’. But hey, I’m 23…there is a lot to come yet, this really can’t be the end of the road already. I won’t let it be the end of the road.

I very much hear what you’re saying about a journey though. I imagine my somewhat lighthearted attitude will change once I am being taught how to inject, but one step at a time.

Good to hear from others anyway, best wishes to all 🙂 x

I’m off to a neruo appointment now to learn more. One of the questions i have written is down is ‘what will happen to my high heel collection?’. From some of the things ive read, I feel like I am almost winning already with this attitude. It will not win, and my beautiful shoes will grace my feet again!

5 years ago

hey @shulla Your a woman after me own heart! Unfortunatly i had trouble walking in heels before all this MS nonsence started but that doesnt stop me looking at them haha – you will get back into your shoes i have no doubt!

its great that your so postive and reading all about it, i did the same (know your enemy and all that) as well as bombard my neuro with questions. My MS nurses are both fantastic and i’m sure yours will be just the same. They are a wealth of knowledge and good at answering questions or any worries you might have.

Also welcome to shift! This site is great as there are so many people who know what your dealing with, they’ve been there, done it, dropped the t-shirt! Its nice to have a place to go when you want answers or advice.

Goodluck with your various appointments, keep wiggling that toe and the shoes will be on before you know it.


5 years ago

Great to read how positive you are, keep that going! Feel free to rant and rave when you need to, it’s needed a lot of the time. :]

5 years ago

Hi Shulla,

Great work on the big toe! 🙂

5 years ago

Hey Shulla….

lots of Loaf to you!

sounds like you’re doing ok… I genuinely wish you all the best…

I recommend that you get in touch with your local MS Society and see if they run a “getting to Grips” course… it’s a 6/8 week training/learning programme for newly diagnosed folk and their partners or family members.

I went on one with my dear old mum…. It was as good for her as it was for me… and i got a great deal out of it.

you’ll undoubtedly learn as much from the interweb as you would from the course… but there’s something to be said for localism and developing community networks.

You may not need them all the time… but knowing they’re there when you need them is really handy!

5 years ago

Hi there.
Just over a year ago I couldn’t move my right side either. I couldn’t stand, I was in a wheelchair, and couldn’t see any hope of things every getting back to anything like normal. But, just last week I played an hour long gig to a sold out venue. Having MS isn’t easy by any stretch of the imigination, but things to get easier so don;t give up hope. Just try to stay as positive as you can 🙂

5 years ago

Thanks for all of the messages guys. So good to hear stories in which the world isn’t over!

I am feeling much better today – not sure I’ve got any better or if it’s just that I’ve learnt how to hobble better. Shuffling round my flat as quick as the road runner today!!

Neurologist was confident that the wiggly toe meant I would be fighting fit in a couple of weeks. I’m hoping just in time to wear some pretty shoes for my birthday on the 27th!

My 2 best friends from uni are coming 300 miles to visit me this weekend and I am determinded to go out for dinner. I already feel the need to kick MS’ arse!

I’ve read so much over the past couple of weeks, and I really do think that this doesn’t have to ‘own’ me, or anybody for that matter. I have very few experiences in comparison to you guys, but please feel free to speak to me if I can be of any help. Getting a flurry of replies really did put a smile on my face.

I have already signed my work place up to the Cake Break, and have a meeting with local MS Society next week. Think they could be of help to my Mum (she is taking this far worse than I).

Have a lovely weekend everybody 🙂 Remember to smile – it’s Friday!! xxx

5 years ago

@shulla, careful how you “kick MS’ arse”. MS can be a formidable enemy and demands a bit of respect.
Don’t start a pitched battle with it, but concentrate on living in harmony with it.
But, enjoy the weekend, get out to dinner and resume your life.

5 years ago

Hi shulla

Glad you found this site.

It is very comforting to have other people who have the same condition around to answer questions or just to talk to about stuff.


5 years ago

Hi Shulla and welcome. Reading your post made me smile because it sort of reflected stuff I’ve been thinking over the las week.
My diagnosable symptoms were similar to yours, 3 years ago. I recovered fairly quickly and returned to work 4 months later, though not as agile as I had been.
2 years later, I had another relapse preventing me from cycling and therefore getting minimal exercise. However, the next 2 years relapse-free have allowed me to progress somewhat – yesterday and today I managed to walk 1 1/2 miles. Ok, I was left with tired legs (right one mainly) and sore feet. The sore feet came mostly from my recent penchant for expensive footwear, but boy, are they bobby dazzlers.
I can’t promise and I wouldn’t want to give you false hope, but I think anticipation can often outweigh the reality.
Last year, during hot weather, I found walking really hard work and I became quite upset resulting in me applying for DLA. I had my DLA appeal heard on monday and I was laughed out of court. I think that was helpful inasmuch I was forced to accept the reality that I’m not too bad at all really, and I decided to do what I can and as much of it as I can. Remission is a state to embrace.

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