pinkunicorn 08/05/15
Last reply 2 years ago
Scared and confused! Help!

Hi everyone. I seen my neurologist yesterday and he confirmed that as my lumbar puncture and blood test result have shown signs of inflammation, he wishes to do another more high resolution MRI scan. My first MRI showed no lesions, but my visual evoked potential test showed a delay in both eyes. He said this is unusual but he is looking at MS and just needs to do the follow-up MRI to confirm a diagnosis and decide on medication options.
I am 28 and have just gotten engaged. I am so scared about what this means for my future and so confused about what I have to do?
I was directed to this site after researching what MS is. I guess I’m just looking for a bit of reassurance and honesty from people who have been through this.

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2 years ago

Hi @pinkunicorn , I can understand your feelings at the moment as your world has been turned upside down.

However, MS is now a manageable condition. Advances in medical science suggest that now isn’t a bad time to get MS, if you were going to get it.

But, for the moment, just try and go easy on yourself and take time for you to get over the shock of this unexpected news.

I always suggest balance to newly diagnosed members. That’s balance in your lifestyle, avoiding extremes, and a healthy balance in your diet.

My other suggestion is to try and avoid worry and stress. I know, it’s not a great time to ask you to do that. But, worry and stress actually achieve nothing. They do, however, antagonise MS.

So, now is the time to sit down and find out about MS on the basis that knowledge is strength. Avoid Dr Google as they can uncover some horror stories, which are unhelpful and normally out of context.

There are creditable sources of information, notably the MS Society and the MS Trust. There’s a link below to the MS Trust’s website, showing some of their publications directed at the newly diagnosed.

And, feel free to post any questions that may spring to mind. 😉

2 years ago

Hey, you’re not alone 🙂
Stumbler is right, there’s plenty of support/help from good sources, and even on Facebook there’s good group (Women with MS) which is quite handy and can be relied on for some support too.
I can’t pretend it’s all fine, cos it’s a rotten disease but support, and even a little advice, is there when you need it.
Sonia x

2 years ago

Hey Hun.
I’m 29 and newly diagnosed myself. I have found information is power and having an action plan. It’s a disease with so many unknowns so simply do as much as you can do to give yourself the best chance moving forward. Investigate anti-inflammatory diets, exercise regularly and be kind to yourself! Haha stress and exhaustion seem to set me off so I took up ️Meditation and am having regular massages. It’s not all bad! xxx

2 years ago

Thank you so much for all the advice. I’m just so overwhelmed just now and trying to deny that it’s actually happening!
I’ll look into all your suggestions but that massage does sound nice! Haha
Thank you x

2 years ago

Hi. Don’t panic! It is not as bad as you think and all the plans you had are still achievable . I felt like you a couple of years ago ( except I am a bit older and uglier!), but it thought all my plans were gone and I d be in a wheel chair. Well it is a few year later and I am a little bit slower, but no less sharp and no less determined to enjoy my life. I am also so much less frightened than I was.
Take a deep breath, take the drugs your doctor recommends and get on with your life!!

2 years ago

I’ve been up all night worrying I will be in a wheelchair! I need to try stop worrying about this, I’ve started getting chest pains so know it’s not helping stressing about it. Think it’s just the worry of the unknown that’s making me feel worse. I think I’ll be a lot more able to listen at my next appointment as I’ll have digested and accepted it a little more by then. I’m quite an organised person and want to know exactly what will happen to me and when – although I realise this is unrealistic.
Thanks for all your reassurances, I think I just wanted to hear from people who have been through it and understand how scared I am.

2 years ago

I know we’re all different, @pinkunicorn , but I’m now approaching my 30th anniversary of my first MS episode.

That takes me back to a time before MRI scans and drug treatments. Things have improved so much these days, in both diagnosis and treatments.

So, how am I after 30 years? I still walk – not far with two sticks and yes, I do own a wheelchair – it only comes out if I need to walk further than my two sticks take me. Indoors, I just bounce off the walls and furniture and still get myself up the stairs to bed.

And that’s after 30 years. OK, I got put on a DMD in 2005, which was then stopped in 2010.

It’s never a good time to get MS. But, like I said, if you’re going to get it, now isn’t a bad time.

Have faith in your body and your medical team. 😉

2 years ago

It’s only natural to feel scared and confused. Advances in MS are coming on so much now. I’ve only been diagnosed 2 and a half years, but just talking to people I can see how far it has come on. I can still walk without crutches at times, but it’s like I’m trying to walk while drunk at times. The crutches only come out if I’m having a bad day, and then, it’s normally just 1.

I feel that knowledge is key with MS, and in terms of how you deal with it. It’ll take time to know your limits, but it’s just a learning curve, both for you and your family. Also, you have to remember when it comes to telling anyone, such as employers, that you are the expert in how your MS manifests itself and what triggers it.

2 years ago

Also these days from what I’ve heard and been told by my MS team is that the early they catch it often means the better the prognosis.
Yes we are all different but this is the hope in my case and maybe the same for you @pinkunicorn.

2 years ago

Hi, I was like you 12 months ago and thought I’d never be happy again and 12 months on I got married and I’m pregnant with my 3rd baby.. So you do Learn to live with it.. My symptoms are mostly to do with my eye but only when I’m tired. There’s so many treatments now and self help if you want to talk message me any time ❤️

2 years ago

Being new to MS (and still undiagnosed), I’m heartened by the level of warmth, supportiveness and quiet resolve of the commenters.

2 years ago

you’re not even sure you HAVE MS yet, so don’t stress! Harder to acheive i know.
You havennt mentioned the other half yet….”newly engaged”? you should be going thru this WITH him. Any illness affects you both, whatever it is, so don’t keep him out of the loop.
He should be your shoulder to cry on at this time.

2 years ago

Hi @reddevine

The neurologist acknowledged that all tests thus far have indicated MS, he just needs another MRI to confirm and help him decide on treatment options. Hence I believe he told me to help get my head around things and prepare me a little more for my next appointment where he suggested we would be discussing treatments which would best suit me.
With regards to my other half – he has been a massive support and one which I am grateful to have. However, this is new to both of us and that’s why I therefore decided to try and reach out and gain some perspective and advice from people who have already gone through, or are going through what we are as a family at the moment. I have been overwhelmed by the kind messages of support and advice received since joining this site and I hope to continue to converse with people in similar situations as I progress along my journey. I am just scared of what is to come and was looking for a bit of reassurance and support above what I am receiving from my family from those who have been in my shoes before.

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