Finally a diagnosis and treatments!

Everyday living
1

Hi everybody

So today I went to see the ms nurse she was lovely and finally gave me my official diagnosis of relapse remitting MS. She showed me my MRI scan which shows 2 lesions and my lumbar puncture came back positive too. I am relieved but also a lot to take in.

I have a neurology app in September where we will discuss medication etc but I’d like some advice and experiences about them.

She said it’s completely my decision and has given me lots of information but I’d like to know peoples personal experiences are. She did suggest Avonex as I have a young son so may be beneficial to only inject once :-/. Any advice is greatly appreciate.

Many thanks

Rose

2

Hi Rose,

I’m glad things are moving forward for you.

I chose an every other day injection as that didn’t need to be kept in a fridge as does Avonex. Between the interferons it does seem the factor is how it fits in to your routine. I do find an every other day injection takes up a lot of time over a week.

I’d be interested in the possibility of more effective drugs, if you would be eligible, studies show the sooner started the better. It’s a matter of weighing up the risks of side effects against those of MS. I’m going to ask my neuro.

Best wishes,

Jon.

3

Thanks for the reply Jon.

They also gave me information on the new tablet that is available October and I’m sure she said this one is more effective than the others but it’s the thought of taking tablets everyday.

I looked at all my booklets yesterday and I’m looking more into the rebif and Avonex I think there’s so much to think about lol!!

Many thanks

Rose

4

hi rose

everybody responds differently to their DMDs

i was really happy with copaxone until earler this year but not so happy now.

make sure that if whatever you choose doesnt suit you, that you can change.

good luck

carole x

5

Hi Rose, I used to inject Rebif three times a week, my MS nurse advised me to do it Monday, Wednesday, Friday & have the weekend off. I was on it for about 8years & had no problems with it apart from the first four weeks with flu like symptons, but even that wasn’t bad & soon wore off. For me, think Rebif worked well for a few years, but as my condition got worse it was no benifit to me & I was advised to stop.

Read as much info as you can before you decide, good luck!

Rosina x

6

Thanks for all your messages. The ms nurse has already pre warned it will be a trial and error deal. I’ll have a look at the website thank you xx