In a bit of a panic

Hello, hope you are all as well as can be.

I am going to see my Neuro on Thursday for the first time since dx - the appointment was for mid May then put back to June and then this morning it was moved forward again, i should be glad that i’m being seen sooner! However I thought i had until June to make a final decision about which dmd to start on and now i have 2 days and i’m getting in a bit of a flap about it all.

I have it narrowed down to two (Rebif or Avonex), but really want to be sure when i get in there to help speed the process up. I am also feeling really anxious that i won’t be eligible at all and i will just be discharged.

I am basically just freaking myself out with it all, so can somebody give me a virtual slap to calm me down!

I can’t stand this feeling of everything being out of my control. Thanks

Laura x

Laura, the out of control thing you’ll get used to but here’s a virtual slap ((slap))! My advice will be go with an open positive mind. It’s great you are being seen quicker than you expected but the appointment will go in a flash. Do you have someone going with you to remember what the neuro says? Make sure you jot down questions or notes you want to talk about and don’t be afraid to refer to them. I don’t know anything about Avonex I’m afraid and found the flu symptoms from rebif tricky. Had 6 happy years on copaxone with minimal side effects. Do you not fancy giving that a go? Either way just talk through the options would be my advice and don’t be rushed into anything you are not happy with. You can always ring with your dmd decision later when you’ve digested what neuro has to say. I see you are fairly newly diagnosed so it probably all feels a bit crazy just now but as time goes on you will know your body better and feel in more control of what you need honestly (not saying you’ll always get it though!). Good luck at your appointment. Max

ps - here’s a virtual hug to go with the virtual calm down slap! (((((((((((((((((((((((((((hug))))))))))))))))))))))))))))))))




Repeat after me…


Why not wait and see what the neuro recommends, if anything? And then just go with your gut feel.

There really isn’t a “right” answer so you can’t get it wrong!

Good luck :slight_smile:

Karen x

Stans mum why did you come off copaxone only been on it four mth

Hi Laura

After I had a chat about them with my Neuro and was given piles of information, I then went and had some time with a nurse showing me how each of them is injected. I don’t know if it’s an option but it helped me. It was after that I did the same and narrowed it down to Avonex and Rebif. In the end I settled on Rebif because it felt a bit less brutal going just under the skin rather than right into the muscle. Plus Rebif comes with a gadget and I love a gadget!

I’ve only had two doses so far, but have had no side effects at all really - a slightly ‘fat’ head after the first one. I know other people really suffer so I suppose it’s a case of try it and see how it affects you.

Don’t panic, it’s really not too bad and you don’t have to decide straight away. Take your time and make a choice that you are happy with rather than feeling rushed into one that you’re not sure about. Good luck!

Thanks for the slap, hugs and the re-assuring words! I am feeling a bit less panicked than i did this morning - time is great at giving you a bit of clarity.

Stans Mum - I did originally consider capoxone but changed my mind on the idea for lots of reasons. My husband is going to come with me so he might remember something useful but to be honest his memory is worse than mine, none the less it’s always good to have somebody else in the room with you for moral support, i have a list but it might need editing!

Karen - sound advice as always, i will definitely wait and see if/what he suggests first before blurting my life story out - i’m sure i can pull of calm, collected in and in control for one day :slight_smile: There is a good chance i’m over-thinking it.

Redbunny - thanks for replying, your reasoning is similar to mine. The thought of the inter-muscular injection is quite scary and the msdecions video did not make me feel less scared! My nurse has given me a small rainforest worth of litterature, so i’m definitley clued up. Good to hear you are not struggling too much with the side effects of rebif- i hope it continues that way for you.