hoju
5 years ago
Aussie Newbie

Hi (or should I say G’day!?)

Stumbled upon the site a few days ago, joined up straight away and I’ve spent all my spare time since, reading the posts (there’s been a lot of nodding of the head and ‘me too!’ comments)and the info links. Great site, made awesome by great people. Haven’t really met or spoken with other people with MS, kinda been avoiding it, but this seems like a very safe and supportive environment.

I was diagnosed as having MS in early 2009. I started on beta-feron in late 2010, after a second exacerbation. I’ve had 2 further episodes, late last year, and started on Tysabri in January of this year. I’m yet to be tested for PML, so I’m still a little apprehensive about the treatment, but my neurologist assures me that I have nothing to worry about for a few years.

Biggest challenges at the moment are fatigue, poor memory, fatigue, difficulty thinking of the right word, fatigue and trying to get the right word out (think ‘go left’, but say ‘go right!’ FRUSTRATING!

Did I say fatigue? I’ve got three beautiful little cherubs – 10, 7 and 5 yo, so they keep me busy and don’t let me wallow in self pity too much.

Anyhow, I look forward to reading more posts in the future.

Alex

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Hey Alex, just spotted your post. Was lured in by Aussie thing!! I lived in there for a year a few years back. MS wasn’t very ‘present’ at that point but I’m curious to know how your symptoms are the heat (I couldn’t tolerate getting too hot while there) and I suppose ‘MS life’ in general down under. Was it easy to get prescribed interferon and Tysabri?

Sorry for all the questions! I love the country and I’m curious to know how it treats its residents with MS.

Karen

Hey Alex, just to say glad you found this site, it’s a brilliant place for all those days when you feel like nobody understands or if you have questions you really need answered.

By the way, totally with you on the fatigue and memory issues – there are so many aspects of ms that aren’t visible it can make it hard to explain to some people what it’s like!

Hope the Tysabri is keeping you well : )

D x

Thanks Karen, I was just reading your tight torso post, I’ve had pretty good success with acupuncture. Whilst it doesn’t get rid of it totally, it does give me a lot of relief, at least for a few days, which allows me at east to get through work and to get some restful sleep at night. It’s surprising how a little un-interrupted sleep can improve your spirits.

I haven’t posted any responses to other posts, as the Australian health system seems very different to the UK. To qualify for beta feron, you need to have had 2 episodes confirmed by neurologist through MRI etc. I was on beta feron for about 18 months and everything was good for the first 12 months, but then I got optic neuritis (losing sight in my left eye was the scariest thing yet) and then soon after that, burning and weakness in both legs and left arm. Because I had 2 episodes in less than 6 months whilst on beta feron, my neurologist wanted to try a more aggressive treatment, so hence we’re heading down the tysabri path. Feeling really good on tysabri, it’s a 3 hour infusion every 4 weeks, no side effects (I’ll be tested for PML later this month I hope). I was getting bad joint pain in knees, feet and hands the day after I would inject with beta feron, so just not feeling like crap every second day is a big win for me. Ah, but I digress, which is normal for me!

Not sure what the specific criteria is to qualify for tysabri in Australia, my neurologist wanted to take a more aggressive approach and suggested tysabri. I’ve gone down the private health path (so I have to pay for MRI”s etc) but at least I get to choose my neuro, psych, Physio etc.

You’re spot on with the heat, I live in Brisbane, Queensland, so our summers are brutal. We’ve had to get the house air conditioned (which my kids love). We’re also lucky enough to have a pool, which is great to get the temp down a bit. So it’s pretty much a/c home, a/c car, a/c work, a/c car, a/c home. I still have to dress pretty lightly and I’m known for kicking my shoes off during meetings, for a little relief, except when you have a hole in your sock!

You are so right D, the biggest hurdle I’m finding with the symptoms at present is that there are no outward markers. Its not like breaking your leg, and everyone can see the plaster cast. How do you explain fatigue to someone without MS? I can have 10 hours sleep, and wake up fatigued?

And I agree, a great site, very supportive, nothing like this down-under.

Take care.

Alex

Hi Alex

Glad you found this site, and just wanted to say hi and welcome.

Pam

Thanks Pam, what’s the coat of arms? Is it your families? Sorry, showing my ignorance here. Alex

Hi Alex

It’s my favourite football team………Bristol City!

Ahhhh, that was going to be my second guess.

Take care.

Alex

Tell me about fatigue I too have three little ones 11 and twins of 8 so you never know whether it is the MS or just the rigours of everyday life. I too have just found this site and am finding it a real support and understanding e.g I didnt know what an MS hug was until now and have experienced them in my last relapse so it explains that. Just to hear from people going through the same things is great

Hi Alex, thanks so much for your response to my message with all the questions and for the tips for the tight torso. I’ve actually been going to accupuncture for the past month or so. I haven’t found it helps much with the tigt torso but it does a lot to clear my head and getting rid of the MS ‘fuzziness’.
Enjoy the cooler months that if not already, you will be experiencing soon down under.
Take care, Karenx

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