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,