Hi What is the average wait time from being told by consultant you need to start treatment to actually starting? I have decided to go for rebif following my consultant appointment at the end of June, but I have yet to contacted. I feel like ‘well I have this bugger condition, can’t change things, but lets just get on with it and start the meds ASAP’. Thanks X
Hi I think it can vary a bit in different areas. I was dx in June 2012 and started DMD’s in November 2012. Having said that I think mine was delayed as my ms nurse appointment was not until October (originally August) as she was ill and she was the one who organised all the paperwork. So hopefully it could be sooner for you. Mish x
Hi Thanks that’s really helpful, do you thinks I shd contact the ms nurse?
Hi again If you have a ms nurse you could contact them to ask how to start the process, assuming your neurologist wanted you to start DMD’s. if you don’t have one you could contact neuros secretary. The process probably varies in different areas, as not all areas have ms nurses. Mish x
Thanks again, I have an ms nurse in my area but as I’m under tertiary centre as well my neuro has referred me to the ms nurse there as well…I have been told that there may be a funding issue. Because of this…ill give them a ring Monday and find out
Hi sorry to post again, but just wondering about others experiences too please…I’m still waiting, secretary said she would chase it the local MS nurse not too interested as although she is my nurse as under tertiary hospital they don’t want to get involved and my letter clearly states to start DMT before next appt in October…just fed up of waiting for stuff in the post. Thanks in advance.
Hi, Rachael was diagnosed in June 2013, had app with M.S. nurse within 2 weeks of diagnosis. Was decided she would start rebif after our holiday in August but she had another relapse so they decided not to wait till after holiday and she started that week. Very quick and lot’s of nurse, neurologist, physio appointments in a couple of weeks of diagnosis and everything set up and started. Would not have coped with waiting around. Keep phoning and annoying them till someone does something. Good luck. Linda x
Hi Thanks it must be tough for you
I can understand your frustration. I was desperate to start DMDs when I was first diagnosed. I was told I had MS informally when I was discharged from hospital in March 2009 and had a follow up appointment in the April when I was formally dx’d. The neuro then said I should start on meds as I had had two significant relapses in a short time (first symptoms in Dec '08) and I thought “great, let’s get started so I don’t go through this every few months”. However I then had to be referred to a prescribing hospital.
Saw the neuro there in May and the DMD nurse who explained all the options and I also had the blood tests to make sure I was okay to start treatment. All the time I was thinking that I was wasting time and risked having another relapse so I mentioned this to the nurse and she allayed my fears and explained about the side effects. The medication took another month to arrive anyway so in the end we decided I would start on Rebif in the August as I work at a school and would be off work so could get the worst of the side effects (hopefully) out of the way before I went back to work.
I think you definitely should have heard something by now as it’s been, what, 6-8 weeks since you saw your neuro? I would keep ringing the hospital until they can tell you that the prescription has been ordered. Mine is delivered by BUPA but it’s the hospital that places the prescription. Until you receive the box of ‘goodies’ and your first set of needles and Rebif you cannot get started.
Keep us posted
Thanks Tracey That’s really helpful, I just wasn’t sure how pushy I should be as everyone has been so good. I know there can be funding issues before the meds are even ordered, I just have a busy job two kids and a life to be getting on with!!(I’m not in denial, just trying to be positive and let this live with me not the other way around). Thanks again X