Last reply 5 months ago
Newbie!

Hi everyone,
I’m new here and have had RRMS since 2008.
I’ve had interferon injections and now I’m on gilenya (hope that’s spelt right). I’ve been having a relapse since December last year and when I saw my neurologist in March he decided to send me for an MRI and hav IV steroids.
I’ve had the steroids but feel even worse than I did before! Lol. The joys of MS I guess.
Well, been going through this journey so far, let’s see how the roads change or obstacles I come across now….

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stumbler
5 months ago

Hi @hardeep and welcome.

You sure sound like you’ve been going through a tough time.

How long have you been on the Gilenya?


hardeep
5 months ago

Hiya,
It’s been around 3 years


stumbler
5 months ago

@hardeep , given your recent problems, is your Consultant reviewing your treatment options?


hardeep
5 months ago

I have to wait. Won’t see him again till August. Always busy. It’s mad, I’m not doing well and have to wait around


stumbler
5 months ago

It’s a similar problem in the UK. Consultants seem to be much in demand…….

You need to take care of yourself in the meantime. Rest up as much as possible. 😉


hardeep
5 months ago

I’m in the uk. London


stumbler
5 months ago

@hardeep , you are in London, aren’t you? Sorry for that mistake.

If finances permit, you could consider a private consultation to move things a lot quicker. You could than switch back to the NHS list.


vixen
5 months ago

Hello @hardeep, gosh, hats a long relapse. Is it new symptoms, or a flare up of previous? It’s not great that you have to wait that long, given that you are suffering. Do you have an MS nurse who might b able to push things through?


hardeep
5 months ago

Hi @vixen
My ms nurse is useless too! Can’t get hold of him and if I do, he’s not useful.
I’ve had the steroid infusion , but I feel miles worse


grandma
5 months ago

Hi Hardeep and welcome, sorry you are having such a bad time, all the info is right a nd it shouldn’t be down to money but it is so can you afford to see your neuro privately? It seems to be the only way to go. Whatever you decide good luck😍


cameron
5 months ago

What hospital are you with? There are some of the best MS centres in the UK in London. If yours isn’t one, you could always change to one which is. The NHS allows you to do this. At mine, for example, there’s an MS nurse helpline Mon-Fri mornings, where you can get not only specialist advice (they have all your details on their screens) but can fast track consultant and outpatient appointments.

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