Hi I was diagnosed last week and really keen to understand my treatment options now. I went privately for my diagnosis and have now been referred back to the nhs. Does anyone know how long I can expect to wait to discuss my options? It’s very bizarre, I’m not really sure what I’m supposed to do… Any advise appreciated Thanks!
I was dx mid nov. I see my ms nurse this coming tuesday for my pre dmd meeting. My ms specialist has already sent letter in january to her my chosen treatment of rebif
I was diagnosed privately last April and had my first NHS consultant appt in July. They retested me for everything to cover their own backs I think, so I had a whole run of appts - MRI no. 2, bloods, follow ups, referrals, etc.! I then had my appt with the MS specialist and another with the MS nurse in November and now see each of them once a year, alternately so I see someone every six months. I’ve also seen neurophysio in January. My relapses have not yet been severe enough to make me eligible for drugs, but if I had have been it would have been starting around December/January. You may not have the same wait as me though! At the time it was all very annoying having to be tested and basically diagnosed again, but now I just see it as them being thorough and ruling out every other possibility, no matter how unlikely!!
Even if it is quick it will feel like forever. Time does funny things when one is newly dx. I am sure that all of us who have been there will remember the feeling of frustration about the thing that feels like an emergency to us not being an emergency to anyone else! Please try to pace yourself and don’t let it wind you up too much if it takes a while - months maybe. Months probably, actually. Looking back, I can see that everything happened pretty quickly for me, but even then quite a few months were involved.
I hope that things go smoothly for you. You have your dx and you are in the system. It will all take shape, so try not to let it bother you too much if it all takes a while. You have plenty on your plate already with a new dx. That’s a big deal, and a lot to cope with. Try to be kind to yourself and not put yourself under any more pressure than you can help by getting worried about time passing.
If i were you i would listen to the great advice from Alison.
I was dx in Febuaray after a long wait and many anxious waits by the letterbox! (it does not get you anywhere) I am meeting with neuro again in May to discuss options. Think this is a fairly standard waiting time but it can depend on where you live. In this time i have met MS nurse and been refered to physio.
Try to think of this time as a chance collect your thoughts about how MS is going to affect you personally, what changes you can make and do lots of research - i find the more i understand the less confusing things seem. Like Alison said you are in the system, things will unfold in there own way.
If you havent heard anything within six weeks (even an letter confirmimg appt) it won’t hurt to ring neuro’s secretary just to make sure things keep moving.
Best of luck to you and stay positive
Thanks all so much, I was reading a few other posts last night so can see it takes a while - alison100 that’s exactly it, feels like an emergency to us! In general I think my coping mechanism is to try to sort out all the practicalities of a situation so prob just need to take some time to actually let it sink in. It’s a very strange situation to find ourselves in - my symptoms have been pretty mild really so I’ve been very lucky and I think it kind of doesn’t feel very real, like I’m a fraud or something! It’s so great to have this forum to share thoughts, concerns or just vent I guess! Good to hear that other people feel the same way and that others have been through the same. Thanks for taking time to reply! Stef X