Last reply 6 months ago
Travelling around the world possible??

Hi,

I’ve seen a few posts around travelling, however wanted to ask something too. I’ve recently posted on the MS Society forum also. I have just booked to go to Cambodia for three months from September until December, hoping to then go off from here on a further 9 month travelling experience, hitting places like Thailand, Australia, Central America, Mexico, Peru, Brazil and Chile. I have mild relapsing remitting MS with my last relapse being two years ago. I’ve recently become lax on taking my Rebif injection due to mood and skin sight reactions that are affecting me. After telling my consultant this he advised changing to tecfidera, saying that this would mean no skin sight reactions (amazing, I thought, sold here already!), 3 monthly blood tests, and they can be completed abroad as long as the results are sent back to the UK my family could arrange delivery of the dmds. I left that meeting feeling on a high, everything was working out, I could stop injecting myself and having bruises appear and not disappear for weeks, like they have the last two years, my plans could go full steam ahead and my MS wasn’t holding me back anymore. I received a telephone call today (still a bit raw) from him, wanting to tell me himself bless him, that they’ve just heard that I would physically have to come back to the UK for blood tests every three months in order to prove I am still a UK resident and viable for medication under the NHS. If I choose not to come back for them I would have to pay privately wherever I am and that would cost thousands.

The point to this very long post, is that I’m wondering if anyone has tried travelling for an extended period of time and if so, what they did in order to do this. I currently can’t see being able to afford returning to the UK every three months from varying parts of the world, especially as I’m hoping to be teaching English as a foreign language among other odd jobs and won’t be able to ‘up and leave’ a position.

I’m also now questioning the change from Rebif to tecfidera, as I’m currently on 6 monthly blood tests for Rebif, however cannot see myself carrying on with this due to how I feel about the skin sight reactions!

Any information available would be amazing.

Regards

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redrighthand
6 months ago

Just a little background – I was officially diagnosed in January 2017 (after a relapse and probable diagnosis in October 2016). I started Tecfidera in March 2017. I don’t have any day-to-day symptoms from my MS.

I went travelling in South East Asia for around four months in Autumn last year. My neurologist made an exception and prescribed four months’ worth of medication (I don’t know how many neurologists would be prepared to do this though).

Do you know exactly who gave the verdict that you’d need to have your blood tests in the UK? I see no reason why that should be the case if you’re only away for one year.


stumbler
6 months ago

@amy89 , travel is a big subject. It is one that has had certain aspects investigated here :-

https://shift.ms/travelling-with-ms

What seems to be clear is that there is a lot of information available, if you ask the right people. And, I’m not sure that your Consultant was the right person.

Speak to your MS Nurse, your Tecfidera Supplier and your GP’s practice for further advice.


amy89
6 months ago

Thankyou Stumbler, I will look into those, they look very helpful. I didn’t think of contacting the gp so will give them a ring too.
Redrighthand, My MS nurse originally was the one that said I’d have to have blood tests, understandably to monitor the medication. It was the MS neurologist who said that having them done abroad would be OK however the MS coordinator in my area has received an email from the NHS cashier (?) saying they can’t fund, if out of the country for more than three months and that I would need to come back to have the tests and medication supplied for the next three months.


stumbler
6 months ago

@amy89 , I can’t believe that NHS Cashier (?). That’s not a medicine, it’s a ball and chain and is almost infringing on your human rights! 😯


amy89
6 months ago

@stumbler Yeah, I think that’s why I’m so confused! I don’t understand why I’m not allowed to do it!
I’m definitely going to contact my GP and see if they have any other information.
I’m still deciding about the change from Rebif to Tecfidera so this is all coming as a bit of a pile on!

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