elliesmith 12/01/18
Last reply 3 months ago
Diagnosed a month ago today.

I was diagnosed with RRMS on the 12th December ’17.
I’m really struggling today with trying to understand this.
My neurologist said he rarely diagnoses people my age (25) which seems odd because it seems to be the average age for diagnosis…
Most of my lesions are in my neck. Which has made for some very interesting issues over the past 8/9months. (And well many years but with no understanding that something was actually wrong).

How the heck am I supposed to accept this!

– I’m going to be part of the research with futurems, in the hopes that it’ll help others in the future as they learn how the path of progression ms will take in those with it.

Sorry I don’t know what else to do. Im just trying to learn how to accept how my life is changing constantly, my independence is going down.

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pikilily
3 months ago

@elliesmith…..Hi Ellie

I was diagnosed on 1st Dec 2017…. RRMS…and I think I probably has the same Consultant as you. Dr. O’R ??? He is super. I also have agreed to do the FutureMS research, in fact my appointment was yesterday. The FMS team are super lovely….and the process is very interesting. I learned a few new bits of info about my personal condition. and if you think of it by doing this research we will have two specialist consultants on our case. What is fabulous is that if the FMS team feel they can input in to your individual care plan, they will. Dr O’R is part of this research programn too so they have a good working relationship.

I am just along the road from you, past Coupar Angus. Although I am, ahem, twice your age!!
If you need or want to chat, or meet, we can sort of stomp this MS path together!
i hope that I haven’t made too many assumptions here???!!! all the best.
Emma T


elliesmith
3 months ago

@pikilily first of all thank you for your comment. Same consultant yes. My appointment with FMS is on the 25th (because I couldnt do yesterday as I had my support worker over).
It’s probably be nice to know more about my condition because honestly all I remember when I was diagnosed was that most of my lesions are on my spine.
Question – did/do they do contrast MRI? – only thing I haven’t asked them.

Dr O’R is nice, I’m not entirely sure on him, he seemed completely in shock when he had to tell me, he went from chipper as he took my notes in to the room to very apologetic by the time he came out again. So atleast I know he cares.

I live in Perth itself. Glad/sad to know there are other folks going through this too.
Honestly don’t know what to do with myself. Honestly crying cause it feels more real now knowing others so close are going through this process too…

Thank you for you comment.
Twice my age doesn’t really matter to me, anyone who can understand the fear and the general “oh crap really?” And then pain, is someone worth talking about. Hell I’m sure we’ll have tips for each other that actually apply with the whole weather thing.

Sorry I’m babbling.
Thank you again.


affibelle
3 months ago

Hi Ellie,
I was diagnosed at 18 in the uk. I don’t think that it’s that unusual? Anyway…Firstly I remember that feeling of first diagnosis as being all doom and gloom. It’s so overwhelming & you said you don’t know how you’ll cope with the change in your independence. My philosophy has been that life is changeable for everyone and everyone has to re-adapt goals and plans ordinarily and it’s no different for us with MS. You can accept your diagnosis in 2 ways either by rolling over and letting it happen or reinventing yourself each time something else changes. Know your enemy so to speak! Read up about symptoms but don’t expect that everything you feel is down to MS. Look after the body you were given, eat well and take exercise to minimise infections.
Above all remember you are alive and even with MS whatever your severity of disability there are things to be enjoyed.
Good luck in your journey & Emma T sounds a great person to begin your journey with X


stumbler
3 months ago

Hi @elliesmith , getting a diagnosis of MS is a shock, whether you expected the diagnosis or not.

Just take your time now. As said above, MS is not the end of the world. It’s eminently manageable these days, with very effective medications now being available. Your age will hold you in good stead, to have a positive reaction to medication.

Neuros are identifying MS at an earlier stage these days, We’ve had some very young teenagers join us recently.

When you’re ready, do your research, which I can see that you’re doing as you found us. But, do avoid Dr. Google and stick with creditable websites, e.g. the MS Trust, MS Society, etc.. Knowing your enemy is a great strategy, as you can learn to live “comfortably” with your MS.

So, eat healthy, live healthy and AVOID STRESS.

So, if you have any questions, please ask away.


pikilily
3 months ago

Ellie,
Firstly, No, they didn’t use contrast.. (luckily for me because I am allergic to contrast medium, although i think its a different one for CT and MRI) The MRI machine that is based in the Clinical Research Centre is twice the power of the one inPRI. So there may be a bit more detail. They only MRI’d my head- so it was about 30mins in the machine. The whole process of tests and chats was about 3.5 hours.
The consultant who runs the research is a neurologist too, and he will have your notes – so he may be able to answer a few questions for you, and possibly go over what Dr O’R said to you. That may help clarify a few things for you.

It makes me sad, too, to hear about others in the local area being diagnosed…and especially when so young. I am at the top(ish) end of the age bracket for diagnosis of RRMS….So I thank my stars that I have done so much in my days! and I thank those same stars that there is a good long list of things I want to do in the future.

So far my self prescribed therapy is:-
1. Find an inspiring tune/song (Gloria Gaynor – ‘I will survive’…hehehe) something that makes you feel all buzzing and jolly. That’s your UP tune!

2. And another that will make you cry – for when its therapeutically good to do so!! That’s your ‘let it go’ tune!

3. Think of something new to start….right now…, a new hobby, or new exercise class, or new studies…that is your gift to yourself, especially for you. Its an ‘I want to do this’ not an ‘I should’! Something that will give you a bit of a buzz! (I have started Yoga …last week…and was really buzzing)

Some of the others here will have some practical tips for getting through the first months, and I will be learning too, but we can ride the roller-coaster in tandem.
There will be tough times and good times, but the folk on here really do understand and are hugely supportive. You wont get mushy, over emotional, sentimental claptrap here, its understanding, pragmatic answers, sometimes collectively angry or frustrated responses to the situation we find ourselves in , but they are oh, so very, real people!!

Emma T x


msmything
3 months ago

Hi Ellie, I was also diagnosed at a young age, a bit younger than you. My 2 cents is stay on meds, stay as active as you can even when it seems like getting out of the house is like climbing a mountain! OH and I’ll repeat the above, DIET changed my life. I used the Wahls protocol and regained use of my right leg. SERIOUSLY!


elliesmith
3 months ago

@affibelle thank you so much for your comment. Mostly its just like my body is cutting me off from doing things and it’s driving me mad some days. No knowing my family aren’t willing to let me travel alone. Normally I’d be with my husband anyway but sometimes I enjoyed going home alone for a few days but now it’s a no go. That hurts me right in my independence. I know it’s most likely temporary as well these symptoms might get better (serious unbalanced and losing where I am).
Reinventing is definitely what I’ve been trying, but I’m sort of in a slump just now as I’m just exhausted from everything.

@stumbler thank you for your comment. Im waiting to start Copaxone, waiting on it being delivered. My biggest concern is the majority of my lesions are in my neck. I also found out they suspected MS three years ago but never bothered to tell me (it’s in my notes, my husband saw). So I’m a little angry on that.
I’m trying to do research and as my dad is ill likely with ms also (inconclusive LP in his 20s and they can’t do an LP safely now), but I ask him about things and how he copes, I grew up caring for him and watching him deteriorate, still is but he seems to cope better now. So it helps to talk with him every now and then.
The futurems research project will hopefully as help me to understand more about it all.
Avoiding stress is definitely my hardest issue, I’m a stressful person, I have an emotional disorder. So while I had it under control, it’s becoming hard to do so because funnily enough in stressing haha.
Thank you again.

@msmything thank you for your comment it all makes sense. Immchanging my diet slowly as my gp doesn’t want to trigger any more issues, but I’m looking at the AIP auto immune protocol. Then I’ll figure it out from there. Trying gluten free and trying to add more varied veggies (my husband is allergic to a lot of things so it’s a huge challenge sadly)

@pikilily sounds like FMS know what they are doing. Does worry me a bit they only looked at brain, most of my lesions are in my neck. But we shall see. Hopefully more information will be given there cause I haven’t a clue, it was all so fast before Christmas and it’s been non stop, I pve hardly had time to remember what was said or wtf is going on if that makes sense.

I’m definitely trying to use all my skills I’ve learnt from therapy over the years. Mostly trying to regulate my emotions (failing today yey haha). .
Currently I’m on a break from my hobbies because honeslty I can’t concentrate and I’m just too exhausted.
But I do plan to do a lot of things, if only I could remember to do them during the day. My mind’s a mess.
Definitely just trying to figure out what works to cope. I’ve got cbd for the bad pain, lyrica for the general pain. And the rest is well I need to keep moving, but trying to not over do it as well. Just don’t know where my heads going haha.
I’ll figure it out. And Indo hope this community is on that makes sense.

Sorry everyone my heads a bit of a mush today. And I’m utterly exhausted myself trying to cut veggies…

Thank you all for your comments though!


stumbler
3 months ago

@elliesmith , your prognosis and that of your Dad will be poles apart.

Back 10-20 years ago, things were so different. MSers are getting diagnosed earlier, and treated earlier. There’s more knowledge available now.

There’s never a good time to get MS. But, if you’re going to get it, then now isn’t a bad time! 😉


elliesmith
3 months ago

@stumbler i know my dad is different but we share similar symptoms (his mum did as well). So it feels safe to ask him how he copes with certain things. Like how he deals with the pain receptors in his left side over acting, being off balance. Among other things.
He’s only being managed by painkillers and such (a lot to be fair but that’s it) he only has one huge lesion in his head, mum keeps saying it’s a spider whatever that means. So clearly different. But still similar symptoms.

I know to be glad it’s now. Though pissed off with the possibility it could have been confirmed 3years ago before this current huge flair. (Since April).

Now it’s time to just learn to cope, do the daily injections and hope for the best.


stumbler
3 months ago

@elliesmith , you’re young, so you have your age and limited damage on your side.

Hopefully, things will be a lot better for you.


marcyg921
3 months ago

I don’t think its that uncommon to be diagnosed around your age, I mean I was diagnosed when I was 24 and it does seem most people get diagnosed when they’re on their 20s-40s but who knows. As for acceptance, well that will come in time but it’s not something that can be given an exact amount of time for because living with a life long condition is never something someone wants to go through but unfortunately its the hand we’ve been dealt with so we just need to take it day by day until we eventually figure out what’s right for us.


barn-y
3 months ago

Hey there Ellie, I’m just outside Perth. i got diagnosed with RRMS in march 2017. (Same neurologist Dr O)
Turns out it was first put on my notes in 2002 when i was in early 30s i only found this out in 2014.
(that was when i first had pins/needles/numbness in my left hand. Had a first MRI and went with doctors thinking it may be damaged/trapped nerves.

I think the delayed timing to diagnose me was due to the fact that i was (am) able to function fairly normally from a physical point of view and for nearly 15 years i moved all around the UK which meant i had no real history with any GP apart from paperwork.
Pins and needles and numbness in hands, arms and legs – especially lower legs where i have almost no feeling – are my constant symptoms – but i am physically still fully able 👍. I have had other symptoms over the years too but they have mostly passed and left no long lasting effect. 🤞
I still run and play football which helps emotionally as well as physically. Ive been taking tecfidera for over 2 months now with no significant side effects. Just flushing which flares up for a short period and passes fairly quick. But – the million £ question is how much is tecfiders helping???
Food and activity is where im going to focus on. Much more fruit and veg. I’ll get my bloods checked in february to make sure everything with my liver and kidneys is still ok 😊
Like you i got involved with the futurems and it was a good couple of hours. I have only told my other half at the moment and deciding who to tell and when to tell folk is my biggest internal challenge. For some reason im worried how people will react. Family mainly. I know im looking to talk with people more as its a strange thing when even the experts are unsure about MS and how it actually works and ultimatelly can be cured.
Good luck and i hope you do find things thst work for you. Ill be happy to share what works in my msworld as time goes by…try be positive each day and absolutrly hope for the best 👍


vixen
3 months ago

Hello @elliesmith, I’ve enjoyed reading this thread you started but sorry for your trauma. Yesterday was one year since I got diagnosed. The honest thing to say is that obvs it’s been the toughest year, but I feel I have emerged a way more purposeful and ‘quality driven’ person than I might have become had I not been diagnosed. Aside from all the mental and emotional processing, I’ve changed my life totally. I worked hard to adopt a diet to help me lose the weight I put on whilst I was the sad carb-munching sick person waiting for diagnosis (20 pounds!) I accept the impact stress can have and have learnt to avoid engaging with things that make my blood boil (politics, work colleagues, baddies on TV). I am way more mindful of health and of absolutely forcing myself to do short walks daily. I’m older than you too and in a different phase, but this MS episode has made me and my husband sit down and think: well, we can’t predict the future or either of us, but how do we want to make the next five years look for us? And I love, love , love what @pikilily said, which is now my favourite quote, along the lines ‘I thank my lucky stars for what I’ve already done…..thank those same lucky stars for plans I have for the future’.

Take good care of yourself, and hopefully you will find that Shift is one of those lucky stars too!


elliesmith
3 months ago

Thank to those who’ve commented today. Sorry I haven’t been awake much or around.
I promise to try respond better in a day or two.
Sorry.


Anonymous
3 months ago

I was diagnosed on my 20th birthday. Lol, symptoms since the age of 18.. gps use to say “ it’s just teenage depression” did a private eye test – optic neuritis and from there my journey of MS began.. Yh my education and work went down the hill. I’m stoll optimistic, just looking for something that my mind and body can handle. I’m gonna be 25 next month. It’ll be 5 years of me having MS.. crazy. Don’t worry, don’t panic. Just adjust your life accordingly.. give yourself some time to absorb what’s been told to you… eat an organic diet and do light strength training, trust me you’ll be atleast 75-85% good health wise. Career wise we do have to literally change it up.. just take it easy. My neuro says I’m still in denial about MS.. and I won’t lie, he’s right. I’d rather keep thinking it’s a lie to keep myself moving… because the day I accept this has happened I’ll give up on myself. But being in denial works for me.. I’m wheelchair free, according to my neuro I was suppose to be wheelchair bounded by now, Alhumdulillah by god’s grace I’m still fully mobile. Yeah, what did happen was, gilenya declined on me after 2 years, so I was switched to tysabri. When I started that, I had activity going on and because of that I ended up having 2 seizures.. so that’s a new addition to MS. I still do my nurses head in by asking “how the seizures happened and why? What’s the cause, what even is MS?!” Yup, 5 years later and I’m still oblivious to what MS actually is. All I can say it deffo changes with age!

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