and I’m preparing my list…I do like a list (otherwise I forget everything!)
So, comments would be appreciated.
I am going to be starting on Tecfidera. I want to do it as slowly as possible to minimise side-effects. How did other people start on it? i.e. dosage. I’ll ask about the aspirin and antihistamines.
I don’t need a disabled badge now and don’t think I’d even qualify for one. But doesn’t it take a while to get one issued, and is it better to apply early, based on a ‘just in case’ scenario? This probably sounds like negative thinking, but I like to be as prepared as possible for things. I thought I would mention this to the MS Nurse.
Tecfidera is started at a lower dosage anyway. But side effects tend to be minimal.
It’s a good idea to get a list of things to take with you. Keep a notepad handy and note any questions that come to you for your appointment. There is no such thing as a stupid question, so get all the knowledge you can.
As for the blue badge, you need to meet certain criteria. Gov.uk has a checker:
It costs £20 where I am and it can take some time. If you’re eligible, go for all you can. As I always say: If it were the other way around and you were eligible to be taxed, do you think the government would think twice before levying you? Nuh uh!
I think the normal starting dose is 120mg twice a day for the first 7 day’s.
Then it’s 240mg twice a day.
Make sure when you do get started on Tecfidera to make sure you have had a decent amount of food before you take it.
This will help to reduce any gastric side effects. I have had a bit of flushing and a rash but it’s only happens occasionally and doesn’t last long. So i haven’t used any Asprin etc. As i think i am taking enough tablets each day already.
My MS nurse helped me with some of the questions on the application form for a blue badge.
I always take my wife to the appointments that way we should remember what i wanted to ask and also the answers to our questions.
Thanks for that. The appointment has been been postponed for a week - which gives me more chance to build-up my list of questions! And to put my Tecfidera requests in order!
db9355 - thanks for that link about disabled badges. i just did the questionnaire and it said that I would have to be assessed by the local authority. What’s actually involved in a mobility assessment? I ticked the box for ‘substantial and permanent disability causing inability to walk or substantial difficulty in walking’. If the assessor turns you down, is there a statutory time that you have to wait before you apply again? I don’t think I would ‘pass’ the test now to get it, but as you never know what’s around the corner (hopefully nothing…)
make sure that you emphasise the difference between a early on a good day to later on a bad day.
good days you wake up feeling halfway to normal, bad days you feel halfway to being a zombie.
the start of a shopping trip i can walk holding onto a trolley but after 1 hour in the supermarket i can hardly speak and my walking is really bad and painful.
this is the way we have to present our ms to the DWP so good practise for PIP.