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when shall I contact?

Right I had my Neuro app over a week ago…he wants me to start DMDs so he would send a message for the nurse to contact me for an app to discuss this. Ive not heard anything yet… Should I contact? And chase this up? Worried as ideally I want to sort these to start the week I return from our holiday in May but a good four weeks before our next holiday. Otherwise its gonna get later and closer to not only the june holiday but my sons birthday in July. I know this seems organised and maybr a bit demanding but I value them times and don’t want reactions to DMDs, anxieties etc to spoil them. Thanks guys x

Hmm it can take a while. I guess it changes from area to area. Personally I saw my neuro in June 12, who told me it was taking one month just for letter to be sent following that appointment! My apointment for ms nurse came through for end of August. Unfortunately she was then off ill so I didn’t see her until October. Finally got DMD’s in November. I am still having side effects! Hope it goes better for you, but be prepared just in case! Mish x

Things may have sped up in the past four years but I had to be referred to my nearest prescribing hospital and it took just over a month for the appointment with them. On that day I saw my new neuro and the nurse who discussed all the DMDs, showed me the auto injector that goes with each of them, handed me the paperwork to read through and a card with the msdecisions website on it and told me to go away and choose one. Later that week I saw my local nurse as well and discussed things with her a bit more and by the end of the week I phoned the nurse at Addenbrooke’s to order Rebif. She then passed my details on to Bupa but I cannot remember how long it took for them to deliver the kit and the first syringes etc (the Rebismart wasn’t available back then), but I think it may have been another month as they like to sort out payment for the prescription etc first. I had chosen to wait until the school holidays to start the injections so I had plenty of time anyway but I think it might be worth your while to chase your nurse and exlain that in your case the timing is critical so it doesn’t spoil your holiday.

Tracey x

Thanks for that, think I will chase it up and try and find out. Given I’ve hand two relapses in less that tree months I don’t want it o take too long, willing to wait eight weeks to start (just after my holiday) but really don’t want to push my luck waiting longer as this relapse has left damage and affects my walking. No harm in chasing it up eh? X x x

Thanks for that, think I will chase it up and try and find out. Given I’ve hand two relapses in less that tree months I don’t want it o take too long, willing to wait eight weeks to start (just after my holiday) but really don’t want to push my luck waiting longer as this relapse has left damage and affects my walking. No harm in chasing it up eh? X x x

hi lisa, i waited a total of three months to get my avonex after neuro appt and ms nurse but i must say so far and that was 14 months ago no relapse!!! gd luck.

It can vary so much as to how long it takes. When I started Copaxone it took about 3 months all up from being told I would be given it to actually starting it and yet with Aubagio ( a new oral) I went to my neuro with no idea that it was even available and walked out of the appointment an hour later with the box of tablets in my hand!!!

If it was me I would ring my MS Nurse and just ask what the process and time frame is likely to be. No harm in asking and of course you will be wanting to be able to plan around it. Usually with the injectables the slowest part seems to be getting the home visit with the MS Nurse to teach you how to do the actual injections.

All the best with it,

B

Thank you. I’ll ring today or tomorrow. Thanks again x