Last reply 3 years ago
New to the MS world…

Hey there.
I’m afraid I just stumbled across this site and it looks beneficial.
I’m Chloe, age 22 and I was diagnosed with MS two days ago. Although I had my symptoms for a while (optic neuritis, tingling, balance issues, ms hug and numbing to be a few), it was still a huge shock for me. Although I am coping well, it is still daunting to be faced with this. I am a strong person so I won’t allow it to affect me too much mentally.
I am due to go back to the Neurologist soon and to be assigned with an MS nurse apparently.
I hope you are all doing well and hope to speak to you soon!

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cameron
3 years ago

Welcome, Chloe! This is a very supportive community and we all learn from each other. An MS diagnosis is a game-changer, but nowadays the big focus is on MS management, i.e. getting on with your life with as little disruption as possible. There’s a lot to learn! Your MS nurse will be your first line of information and support, so good luck with that referral. Expect ups and downs emotionally (we’ve all been there) and let us know how you get on. Big hugs xx


stumbler
3 years ago

@chloeautumn , I am sad that you have had to find us, but, given the circumstances, I’m glad you have found us.

A diagnosis of MS does answer quite a few questions about events in your earlier life, but it is still a shock. So, now, you just need to be kind to yourself whilst you allow this news to sink in.

Use this time, as you are doing, to start learning about this medical condition. MS does not appear to be openly discussed and is regarded as a bit of a taboo subject. But, it’s not a terminal condition and, with the advances in medical science, is now a manageable condition. So, you need to see how you can best manage it.

I see you have already received some great advice above. And, hopefully, the forum members will be able to continue to support you.

Shift.ms came into being to provide support for the younger generation, as it was felt that there was little support available. So, the majority of the membership would be around your age. However, the membership also comprises of people not yet diagnosed through to those of us who have had the condition for too many years.

So, sit down, put your feet up and have a look through the forum. It’s a pretty informal place so feel free to ask any questions that you may have.


chloeautumnx
3 years ago

Thank you very much Stumbler and Cameron. I feel very well supported already and very welcomed. Do you both have MS nurses? I just don’t know the process that’s all. Is it a while before you get one?

MS is already in my family so it has been close to my heart. However, it is much closer now.
Do I need to inform the DVLA and my car insurance provider of my diagnosis yet?

Take care of yourselves.
Chloe x


stumbler
3 years ago

@chloeautumnx , MS Nurses are a specialist nurse, who only look after patients with MS. They will be your first point of contact for all things MS and will liaise with your Neurologist and GP, as appropriate.

Yes, now that you have a diagnosis, you are legally obliged to tell the DVLA (Tel: 0300 790 6806). It’s a standard process, where they will ask you to complete a form/medical authority and they will then make enquiries of your Neurologist and GP regarding your ability to drive. More details here :- https://www.gov.uk/browse/driving/disability-health-condition

They may ask you to return your licence, as they will probably put you on a 3 year expiry licence. You can still drive throughout this process.

You also need to advice your car insurance company. They will record your diagnosis and ask you to confirm that the DVLA are aware. They should not increase your premiums because of this diagnosis.


cameron
3 years ago

DVLA does need to be informed (legal requirement) and as soon as you’ve done that, tell your insurance company that you’ve informed DVLA. There’ll be no increase in premiums. However, DVLA seem to be changing all newly MS-confirmed drivers onto a 3-year licence instead of a 25-year one. This is a pain – it means you’ll have to apply for renewal every few years (although there’s no fee for doing so), but it seems as though it’s standard procedure regardless of how well you are. And everyone’s experience of doing this is that once DVLA are informed, they can take months to respond and update your licence (during which time, it’s perfectly legal to drive).

Re: MS nurses, it depends on the size of your neuro team as to how many there are. I’m with a London hospital, where there are four and – brilliantly – they have a Monday-Friday helpline where you can get instant help and support. I’m very lucky with this, – in some areas the support is spread more thinly. Hope that helps. Take care, xx


chloeautumnx
3 years ago

Thank you very much for the information. I guess I am still a little bit in denial but will inform those companies today.
Will the MS nurse get in touch with me then I presume?
I have been looking through some other threads and it is clear that you are a pillar of support @stumbler 🙂


chloeautumnx
3 years ago

Thank you Cameron. I live in a small village near Buxton so my clinic is Stockport. Much smaller than London.
Hopefully, support will be just as good! 🙂


stumbler
3 years ago

@chloeautumnx , I would hope that your neuro would make an introduction to your MS Nurse for you. They will probably arrange to visit you to get properly acquainted.

This website gives some detail of the services available in your area, including MS Nurses :- http://www.mstrust.org.uk/information/services/

Yes, denial is a possibility for you. it’s one of the stages that we all have been through on the journey to finally accepting the diagnosis. it’s a bit of a rollercoaster ride, which goes through the following emotional phases :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

This journey can take up to a year and isn’t a direct journey from 1 to 7. You can double-back and revisit phases from time to time.

So, be patient with yourself.

“A pillar of support”. That’s very kind of you. You could also say that I’ve been around for ages and “around the block” a few times too! lol 😆

But, I am around the forum most of the time, which is why I’m a volunteer administrator for the forum too. I try and keep out undesirables, of which there are quite a few on the internet.

You will receive support from all over, as the forum is represented on the major continents.


chloeautumnx
3 years ago

Ah, I see! I think I was trying to rush myself along the process too quickly. I have done well to not get emotional but then got emotional last night. But, I am feeling more comfortable today so that is all good!
I think my family have taken it pretty hard though.

You do well to support and monitor the page and I am very glad I came across it. I came across a couple of others but I didn’t feel like I ‘fit in’ with those. I do here though!

Already signed up to the sponsored silence for November. I really want to raise awareness for MS.


northernlass
3 years ago

Hi @chloeautumnx ,I had my DX back in April last year but think I am only at number 4 on @stumblers list and bounced back to number 1 a few times but I enjoy this website a lot as I haven’t told many of my friends on facebook and so like the freedom to just waffle, rant, question, wail or have a laugh on here. I think it takes time to get your head around it but in the mean time we are all here to help and support you and each other with anything.. so welcome 😀


chloeautumnx
3 years ago

Hi @northernlass.
Yes, I am experiencing highs and lows already but trying to be perky!
My Facebook friends do not know either so this is a fab place to come and to meet others like me.
So nice to meet you and thank you for the warm welcome.
How are you coping now? X


northernlass
3 years ago

I’m coping better but I am still having a relapse so as it’s been FOREVER..!! I’m thinking I may have Secondary progressive MS rather than RRMS .. so am pretty fed up with my left leg not working properly still and my left side being a bit numb .. but on the up side I finally got awarded PIP after waiting 39 weeks and received a back payment of lots of money.. constant ups and downs really.. but thanks for asking.. As for friends knowing (I’ve told a few close ones) I am mostly an emotional wreck when I talk about it, not good really.. I did self refer at MIND online to see a councillor who is so lovely and listens to me blubb almost every time I see her and she will try and help me loose some of the other baggage as well as MS that I carry around with me.. And it’s good to talk.. If your family are also finding your DX hard then I suggest they phone someone at MS UK or the MS Society for a chat and maybe they can get some info about MS that might help them to come to terms with it too.. 😀


chloeautumnx
3 years ago

I am sorry to read that you think you have secondary progressive MS @northernlass. But I am pleased for you that you got your PIP application accepted! What does this mean exactly? I have a rough idea I think.


chloeautumnx
3 years ago

Also big hugs to you @northernlass!


stumbler
3 years ago

@chloeautumnx , PIP stands for Personal Independence Payment and is a disability benefit, which is being phased in to replace the Disability Living Allowance.

It’s a benefit which is available to help with the cost of everyday living, which does cost disabled people more.

Now, a diagnosis of MS does not qualify you for this benefit. It’s the disability that MS causes and the impact this has on your life, which is assessed. 😉


chloeautumnx
3 years ago

I’m glad you got somewhere with it then and thanks for filling me. Although I imagine that it’s a bitter sweet outcome? Because I’m sure you would rather be more ‘able’.
Hopefully I am a whole off anything like that.


stumbler
3 years ago

And, let’s see if we can keep you that way, @chloeautumnx . 😉


chloeautumnx
3 years ago

Yes, let’s


chloeautumnx
3 years ago

chloeautumnx
3 years ago

My stupid phone won’t display all of my messages. Grr


northernlass
3 years ago

It’s true @chloeautumnx it is bitter sweet.. nice to get some money and back dated was great as I was able to buy an automatic car which has helped me a lot 🙂 but to finally be classed as disabled is a bit of a downer. I really hope you are able to not need to go down that route for a long time Chloe.. Best wishes 😀


tracyd
3 years ago

@chloeautumnx
Hi, I’m another new DX, trying to work my way through all the information about MS and what to do, I have lots of daft questions and the occasional daft answer. Everyone her has been lovely and informative, it’s a positive place to discuss something crappy that’s happening to us all with people who understand, enjoy here 🙂


chloeautumnx
3 years ago

Nice to meet you.
I really think it’s getting worse. My knees have been so bad spasticity wise and today I can’t even walk properly, never mind bend! My face won’t stop twitching either!
Looking forward to seeing the nurse.
This page is brilliant!


chloeautumnx
3 years ago

It doesn’t help either when people seem to think that it’s all going to ‘go away’ if you ‘stop thinking about it.’ I wish it worked like that!
Sorry for the rant.
🙂


us-emma
3 years ago

@chloeautumnx,

So glad you found shift early on! If you are up for advice I have but one to give- stay active & up beat (sounds like you are a natural optimist) 🙂

I was diagnosed 11 years ago at age 29. I was a very fit person at that time. Now so many years & relapses later I became very out of shape due to large amounts of fatigue that prevented me from leaving the house for any but the most pressing appointments.

Last year I received Lemtrada (approved in UK as first line therapy) and I experienced a huge turn around in my MS- I got better! Which has been more than I could hope for, but now after so many sedentary years I am struggling to get back into good physical shape.

So I say- keep up positive thoughts & active lifestyle. You never know what amazing breakthrough is around the bend! I encourage to keep the parts you have as healthy as you can!

Go out & enjoy life. I did early on and it was only after a bad drug switch (Gilenya didn’t work for me) that I got worse & sedentary. For many years after diagnosis I traveled quite a bit and only remembered MS when I had to take my meds 🙂

You have many awesome years ahead- don’t let this define you.


chloeautumnx
3 years ago

Thank you @us-emma. I’m really glad I have found it too. I’m going to try swimming and I do Zumba too. X


grahamjk
3 years ago

Hi @chloeautumnx I’ve just found you’re thread and I’d like to say hello and welcome to the joyful world of numb limbs aching joints and walking like you’ve had a good drinking session Lol. I too was diagnosed last year but the only advice I can give is stay positive and try to enjoy life but most of all stay active. I see you’re going to try swimming, that should help.
All the best Graham
By the way if you drive you should be entitled to a blue badge, contact Derbyshire county council at matlock and they will assist you.


kirstyscotland8
3 years ago

Hello! I haven’t read anyone else’s comments because I am half asleep, but I am 23 and have had all the same symptoms as you so do get in touch if you ever need to chat 🙂 Sent you a wee friend request x


chloeautumnx
3 years ago

Hi @grahamjk
Thank you for replying. It’s relentless isn’t it? I had a positive day yesterday though after a couple of down days so I’m hoping to be positive again today.
Oh right! That would help a lot but I am not yet on medication (waiting to see MS nurse and neurologist) so they probably wouldn’t consider it?
Don’t want to ring up and them to laugh in my face! Ha ha. X


chloeautumnx
3 years ago

Hi @kirstyscotland8
Lovely to meet you. I have sent you a private message if that’s ok.
X


thecuriosity
3 years ago

Unfortunately, it seems like everyone dealing with a recent dx has up and down days and ‘why me?!’ days. I’ve had plenty of moments like that since I was diagnosed in July, not the best situation, but it could’ve been worse. This site has an lot of great information and support though. Good luck with your nurse, I think if you get a good one you feel you can talk to it really helps.

Good luck with the swimming, it’s been my favourite thing to do for years to chill/exercise and if nothing else it really helps de-stress and untangle the knotty thoughts in your brain.


grahamjk
3 years ago

@chloeautumnx regarding the blue badge, I have been issued mine the only medication I am on at the moment are pain killers so I don’t think being on Ms meds are crucial so long as you’ve had your official diagnoses, for this. Thinking about it you can download the forms from their website, and if you really want a laugh my assessment was on the phone.


chloeautumnx
3 years ago

@grahamjk
Oh right! What would you class as an official diagnosis?
I was summond by the neurologist after my MRI who stated that I have two lesion on my brain and one on my spine and that it is MS. Can’t get more official than that. But I don’t have it in writing yet. (Waiting for letter that she has sent to GP) x


chloeautumnx
3 years ago

Thank you @thecuriosity
It really does have bad timing! Ha ha. But I’m classing myself as lucky for the early diagnosis. Every cloud.
Thanks for the advise.
Chloe x


grahamjk
3 years ago

@chloeautumnx As I was having difficulty holding a pen I asked the CAB if they could help me with the form as one of the advisors in burton on Trent is partly funded by the local Ms society I enclosed a copy of my hospital discharge paper (as my first major relapse took me off my lags completely I was in hospital for 17 days) and my id but that’s about all I included they will probably contact your consultant so long as they have said it’s definitely Ms you should be ok, by the way which hospital are you at??


chloeautumnx
3 years ago

@grahamjk
Oh I see. That’s terrible. My first major relapse was/is optic neuritis.
I think I’m gonna wait for the blue badge thing. I need to fill in this DVLA form first.
I’m at stepping hill in stockport? Where are you?


northernlass
3 years ago

Hi @chloeautumnx regarding the blue badge application (I got mine god-send..!!) ask Neuro for a letter of diagnosis and every person you see regarding your MS.. take ALL your paper work with you when and if (Lol over the phone @grahamjk love that) you are offered an assessment with a Physiotherapist. Mine just took note of all my paperwork and I took ALL my medications with me (Only had a five day batch of steroids which I had finished so took the box but I am not on medication for my MS at the moment.) and then she just timed me walking back out of the building.. which even with a walking stick was slow going at the time .. she sent off her findings to someone else who made the decision.. I got it ..had to pay £10 and send in a recent photo with the form et voila.. blue badge. The great thing about the blue badge is it is for you so even if you are in your mates car as a passenger your friend can park in disabled bays or nearer to the shops as long as you are the passenger and you display the badge 🙂 Also if need be you can park for up to 3 hours (must set the clock part of the badge and display) on double yellow lines. Some car parks you still have to pay but some are free with a blue badge but all in all well worth the tenner good luck 😀


grahamjk
3 years ago

Hi @chloeautumnx my neurologist is at the royal Derby I only wondered as you’re in Derbyshire whether you were at Derby hospital. My second relapse in November included optic neuritis which was a pain in the arse as I’d just managed to get a Christmas job but needed to drive to get there and I knew I wasn’t safe to drive so had to give it up (yes I’ve had two relapses in 9months) so I’m having fun lol. But my eyes straightened up approx 3 weeks after steroids. But talk to your local CAB they will help you.


tiggermum
3 years ago

Hi there @chloeautumnx. This site – as you can probably tell – is a good place to chat and find all sorts of things happen to all sorts of people.

My only piece of advice to you would be to talk to everyone who may be around. Dont be afraid of MS or telling others either. If you feel you want to tell them that is!

Whatever feelings you have, then we are all here to listen (well, to read actually, but you know what I mean :))


chloeautumnx
3 years ago

What’s a local CAB? 🙂 Thanks guys for your comments. x


grahamjk
3 years ago

Hi @chloeautumnx sorry my bad! I should have made it clearer I mean citizens advice bureau Sorry!!!

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