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newly diagnosed - ups and downs

Hey everyone, I’m 18 and yesterday I got the confirmation of my diagnosis. Although I currently live in Poland I decided to write here, because I applied to a few universities in the UK for September 2013 intake and I’m really desperate to go there this year even despite having MS.

It all started last November, before my mock exams at high school. Almost two months of terrible headaches, fatigue I’d never had before and some slight problems with vision in my right eye. For some time I hoped it would come and go, but unfortunately it didn’t. Later I felt some numbness in my right hand and leg, dizziness etc, so I decided to go to the neurologist. Got referred to an MRI and had the scan made over two weeks ago. It turned out there are some changes in my brain “like in MS”, so I dashed with the results to the same neurologist, who said it might as well be Lyme disease and referred me to the hospital. In the hospital they saw my scans, made a few test for Lyme disease (negative) and made a lumbar puncture. Its results indicate I’ve got MS.

I left the hospital on Monday, I’m still taking steroids and I’m struggling with their side effects (headaches, terrible lack of appetite, sleepiness, muscles pain). Also, I started to worry that maybe it’s not MS at all as there are hundreds of stories of people who were misdiagnosed and treated for it and later it turned out they had Lyme. As I said, I had some test for this disease but apparently none of them is 100% accurate and I that’s why I’m wondering (and worrying) whether they treat me for something I really do have.

After the MRI and at the hospital I was really positive about everything (much more than my parents tbh), but since yesterday I’ve been struggling a lot. Apart from all these thoughts about Lyme, also because I have my exams in May and by then I’ll have been halfway through the first three months of the proper treatment (with interferon), so I’m scared I won’t be able to overcome the side effects of it

I’m sorry for quite a long post, but I just feel I needed to open up and share my story with people who have/had similar problems. Any piece of advice would be fully appreciated.

Thanks :slight_smile:

Hello. Firstly welcome to the site. Here youll find support, advice and stories of peoples experiences…they`ll all be different, even though they all have MS or like me, something very similar.

I was tested for MS, Lymes, Hughes, tumours and a whole host of other things too.

All the tests came back normal, so I am left with a diagniosis of spastic paraparesis/cause unknown.

I am very sorry to hear how you have got this condition so early on in life.

it is cruel, but sadly, it cant be given back!

It is bound to be very upsetting when you have so many plans.

About the Lymes...........youve had the test, which was negative, so please dont spend your precious energy, trying to fight the result.

Concentrate on your exams and your move. I hope you get the grades you need and do remember that life with a diagnosis like MS, can still be a very good life. You`ll have to pace yourself and find your limitations.

This may mean you wont have the energy of the typical new students at uni, so take it steady, yeh?

Good luck and look after yourself.

luv Pollx

Hello and welcome :slight_smile: Your English is brilliant! (I’m assuming you’re Polish here of course :-)) Having MS is definitely a life changer, but it is still perfectly possible for you to study in the UK and do lots more too. Make sure to tell your University and the department about your MS and use every possible bit of help they offer to keep stress levels down and keep you healthy. Side effects from interferon are highly variable, but on the whole, they are manageable with paracetamol and/or ibuprofen. So nothing to worry about. More important is making sure that you continue to get your meds when you are here. For that, you will either need to get extra supplies when you are at home or you will need to get them prescribed here - for that you will need to be under the care of an MS specialist neurologist. I don’t know how easy that will be to organise from Poland so plan well in advance. It will also be important to have day to day support from either an MS nurse or a really good GP. It may be that you never need them, but better to have the contact details just in case. As far as your diagnosis goes, a diagnosis of MS is rarely 100% certain, but as some people say, if it walks like a duck and quacks like a duck, then it’s a duck. But, if you’re unsure, then a second opinion might be helpful? This all must be one hell of a shock, but please believe me that you WILL still be able to do all sorts of things with your life - MS does make some things harder, but life really can still be good. Karen x

Hi Alex, I’m with Karen - what fabulous English at just 18. I’m sorry about your diagnosis but I am sure that you will still be able to do all the things you want to. You seem determined to study at a university here - the MS shouldn’t stop you. Just make sure that everyone that matters is aware of your situation and can lend support if needed! Take care of yourself and take things a day at a time! Try not to worry too much - this is not the end of the world and your life stretches ahead of you, enjoy it! It won’t always be easy but I’m sure you’ll manage. Teresa xx

HI Alex and welcome - it’s always good to be able to ‘open up’ and folk on here really do understand. It’s very early days at the mo, and you’ll need time to adjust, so be kind to yourself and as others have said,take things a day at a time.

Hazel

thank you so much for your replies, they are really uplifting :slight_smile:

Karen, you’re assumption is right, I’m a Pole, but I’m also an anglophile and I’ve been working hard on my English for a few years :slight_smile:

Of course, I’m going to inform my firm and insurance choices about my MS as soon as possible (actually, I’m mulling over whether I should ask them if they can help me in any way outright or just inform them about a ‘change’ in my application).

When it comes to medication - it won’t be a problem, because I’m eligible for an MS treatment programme in Poland, so l will come to England with three-month supplies. And I will have to come back here every now and then as they want to control the patients involved in it.

Do you think that the unis, knowing my situation, are going to offer me a care of a neurologist or will I have to do it on my own?

Also, could you tell me how does the treatment look like in Britain - do you need to pay for it or is it covered by NHS? I’m really curious about it, because in Poland only people young enough (about under-30) and without any major disabilities are eligible for treatment for five years and after that, unless they get any worse (!), they get nothing.

Alex xx

Your Uni will have a medical centre on or near campus that you can register with for GP care, but a neuro will mean having to get a referral and then waiting for an appointment which can take months. I would suggest contacting the medical centres of your firm and insurance Unis and asking them how they can help with arranging specialist care while you are in the UK. Eg, can they just refer you to an MS nurse since you already have a neuro or do they have to refer you to a neuro first and, if so, can that be done in advance of you arriving to shorten any delay in you having help in the UK? The Uni department won’t be able to help with this I don’t think. (Certainly not if it is anything like mind was anyway.) Unless you’re doing medicine?? There will be a Student Support Office (or something similar) that may be able to help a bit - it would be worth contacting them in advance. I don’t think I would bother formally advising them of your diagnosis unless they say you should. It’s not the sort of thing that the people making offers tend to care much about. Re meds: the UK rules are that people with RRMS who have had at least two “clinically significant” (basically serious/debilitating/disabling) in two years, are over 18 and can walk 100m (? can’t remember for sure!) can get an interferon or Copaxone. They are free and there is no time limit. I don’t know the rules about prescribing to visiting EU members, but I would guess that resident EU members would have no problem. Kx

Nothing to add to others’ replies and good advice, but I just wanted to add hello and welcome from me too.

Alison

x

p.s. Your English is wonderfully good - congratulations.

Hi od mnie też!! Powitanie do forum. mam nadzieję wy znajdujecie to użyteczne. JA rzeczywiście nie może mówić Język polski JA po prostu co to wyrabiałby wam czujecie większa ilość powitanie. Xx

once again many thanks for the warm welcome:)

I’ll definitely do my best to have everything sorted out before my arrival in the UK, even if it would mean that I have to go there just to do it personally before the start of the academic year or anything.

As I said earlier, for the first 5 years prescribing medication isn’t going to be a problem, but later… I was going to stay in Britain after university anyway, but (it’s quite ironic imo) the diagnosis made me realise that no matter what, I literally have to live abroad if I want to lead a normal life, because in this country there’s no future for people with MS. At least any stupid ideas of coming back won’t ever cross my mind!

x