@JasFromTas

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JasFromTas

Hi and help with new diagnosis...

Hi Everyone, New to this forum and to MS, but thought I’d say Hi. Are most of you from the UK/Europe? I’m in Australia (originally from Tasmania, the island below Australia, though now live in Melbourne), but there aren’t any online young MS stuff on the net for down here, so thought I’d join you lot :-) Not sure how most people go with the highs and lows of first being diagnosed. I feel like this is a rollercoaster that is out of control “I just want to get off now, thanks” is the thought that goes through my head the most! What can I say to date? I had issues at the beginning of this year (Jan-March) which my GP (local Dr) said was a pinched nerve in my neck/foot/hands, a bladder infection, and an ear infection (hence balance issues). I am a assistant nurse manager at a 70 bed hospice, but we have 40 beds reserved for neuro patients (motor neuron disease, Huntington’s, MS etc) so I knew it didn’t all fit (and I knew what did, and it scared the crap out of me!) but when I said this to my doctor I got labelled a hypochondriac. Excellent Doctor! After discussing it with friends in March we also talked about MS, but then decided that nurses self diagnose too much, and when everything went away, I thought “You beauty! Sweet!” So when stuff came back in Aug I saw a different doctor, got a MRI/neurologist then MS specialist and had methylpred. That was in October, just after I turned 27, and the MS specialist started talking about DMD with me (for RRMS; I thought, give me a month, will think about it and decide). Things improved, but not gone. But then by the end of Nov, over 3days my legs went, and I spent 3 weeks in hospital/rehab. I have had even more methylpred, and started Tysabri, which I am not well pleased about; feel hemmed in regarding my options but things have changed so fast my mind can't keep up. So now I am feeling right cranky (sorry, to blast the illusion that might be out there that Aussies are all laid back and happy – we are usually – just not me at the moment!). I think the thing I am suffering from most is not knowing the future. The unknown is killing me and keeping me in a sweat at night. I just want to rewind this year and start afresh. Or forget. But stop thinking about it. How do you guys move on? Does is just happen one day? How long does it take? Help and ideas appreciated, Cheers, Jasmin

f3ng5hu1

@f3ng5hu1

<a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> Firstly welcome to shift, a good place to get answers from people who actually have the condition as opposed to medical sites that tend more towards a 'third party perspective'. A lot people on here have had the condition for years and could probably advise you better (only know about mine early this year). I think you come to terms with it over time, at first was a complete major shock to hear I had it but then after a while you start to think kike 'oh well, nothing I can do about having it, just got to make the best of it'. For me it was good in some ways as it humbled me a lot, put life more into perspective i think and also kick started me back into doing live music again, do it while I still can so to speak but it is different for everybody, none of us unless in the very very later stages of it can tell how much this thing is going to affect us and how many years it will take before it possibly disables us (i think I read 85% of people on average with ms become disabled over time). For me the most frustrating part is the random little quirks that happen, little body jolts that smack me from time to time screaming out "yeh you have ms, take that sucker!" lol that is frustrating not because of the pain so much (not always that bad to be fair) but because of the sheer frustration of people not understanding that side of it. it is though so very different for everybody so my advice is just take it one day at a time, don't let it get to you, don't let it drag you down mentally worrying about the future (which is so uncertain anyway) but stay positive, Hope that helps.

f3ng5hu1

@f3ng5hu1

lol wasn't able to edit typos after posting this time for some reason ^^

pottypete

@pottypete

Hi there!Are you a little devil then?

Stumbler

@Stumbler

<a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a>, welcome to our little part of cyberspace, where we all share a common understanding of each other. Looking at your final issue about the future. Nobody can foretell their future, so that puts you on a par with the rest of the human race! Yes, you've had a diagnosis of MS. That in itself can be a life-changing event. It will make you re-evaluate almost everything and you'll see everything in a slightly different way. It can take about a year to negotiate the emotional phases that you'll need to navigate before you can attain some form of acceptance. So, you're on Tysabri, which will hopefully prevent/reduce potential relapses. That's a positive move. MS is a manageable condition. Disability is not a definite outcome. You just need to learn to live with your MS, so that you don't "aggravate" it. Be nice to yourself, lead a healthy life and try to avoid stress. :)

f3ng5hu1

@f3ng5hu1

I came across this video just now after linking from someone else's vid link about a neuro in London. This ones european but I could relate to it and what was said. I'm usually quite skeptical about vids to do with ms but I did find this one kept me watching as it showed a variety of people who have it who have different ages and lifestyles. Here is the link to it:- http://www.youtube.com/watch?v=R7l7wBW7e_g

Gav

@Gav

<a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> on the subject of MS and rollercoasters, I made ananalogy you might find useful...http://www.youtube.com/watch?v=TVK-DXtU6wE I hope you find this site helpful :-)

cameron

@cameron

Hi <a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasfromTas</a>, welcome to shift. The time around dx is so truly awful that I can't find the words to express it. 'Life crisis?' Worse than that! The goal I think we all share here is to be able to get on with our lives. I've found that it's possible to do that BUT ONLY with good medical help in a variety of areas. So if there's anyone you see - whether it's your GP or neuro or nurse - who isn't up to scratch, make a fuss or go elsewhere. It does take time to get your head round it all but there are plenty people on this site who can contribute their own experience. Big hugs.

sunsetlily

@sunsetlily

<a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> welcome to shift.ms! MS is different for every individual. I have days where Candy (my cane) is with me, but then there are days where I can do a 3 mile walk followed by an hour of yoga. Stay active and positive. I was diagnosed at 23 and am 32 now. It has been challenging, but has also made me a stronger person. Just tell ms that you are stronger than it.

VixR

@VixR

Hi <a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a>, you've certainly come to the right place! I cannot emphasise enough how incredibly supportive, knowledgeable and lovely everyone is. As for moving on, I'm 4 months in and have only just accepted that someone's not going to tell me it's all been a terrible mistake and I'm fine after all. It will take you some time and there will be good days and bad days, but you'll get through it, and we're all here to help.

ophelia

@ophelia

<a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> welcome!!! Your story is pretty much identical to mine. I was diagnosed in April this year at 27 years old. Had a major relapse that took out my legs, had steroids, got better, had a few more relapses (about 1 a month), started DMD's but only had them for about 2 months before being offered tysabri by my consultant which I am due to have my 5th infusion on Monday. Tysabri has been the BEST decision I've made as it seems to have almost eradicated my symptoms. I am still on the roller coaster, some days I want to scream and cry and stomp my feet at the beastly little MonSter and other days I forget I even have it. I'm trying to say positive, there's nothing I can do to get rid of it but I CAN choose how I deal with it. You'll find your way of coping. Hope you stay well in the year to come! Merry Christmas and Happy New Year!!!

ophelia

@ophelia

Oh and <a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a>, I'm a midwife in the UK, I totally self diagnosed despite being told numerous times I was suffering with migraines or sciatica. Knew it didn't quite fit!!! I researched and googled(!) and eventually found a GP that believed me and was on my side!!!

beccygreeneyes

@beccygreeneyes

I was diagnosed in May after my second MS flare up. I had something called optic neuritis so went hald blind. I turned down the offer of Copxone and instead started something called LDN back in July.The coming to terms with things issue- i still have nt accepted it. My MS affects me daily with fatigue and balance problems so its hard to forget about it! I do think its something that takes time. I am not even 8 months in so just try and tell myself it will get easier. on the plus side. Because i got diagnosed i decided to take the bull by the horns and set up my own nutrition consultancy! It is going well so far so....every cloud!

JasFromTas

@JasFromTas

Hello Everyone (sorry, too many names)! Thankyou all for your messages over the last week – have read them but am having issues with my computer replying, but VERY much appreciated all the advice but especially knowing that I am not going mad with the emotional rollercoaster this has launched me on! I AM NOT THE ONLY ONE! :-) I very very much appreciate everyone’s messages of support and encouragement, I am feeling much better (and I KNOW that the discovery that I am not alone has helped heaps) Hope everyone is enjoying their summer holidays Cheers Jas