I’m currently 4 years in, clear MRIs last two years, one year on plegridy and now over a year on tecfidera, which I’m thankful for as I am lucky enough to tolerate it well so far
My issue is I have yearly neuro appointment coming up and I’m at a blank what to talk about
I did tell the ms team I didn’t want to come (it’s a three hour round trip) as not only does it cost me time and money it’s also a massive reminder of having the illness
My neuro is a lovely chap but what do I say, what do I ask? We’ve been over symptoms and how they’ll hang about or fade or not fade at all (have had a burning sensation on tip of tongue for nearly three years)
I’m ‘happy’ on tecfidera if I can use that term !
I don’t want to miss my chance to ask questions only he can answer but also feel I’m only attending to tick a box
Any advice welcome on anything I should be knocking their door down with while I have the chance !
That’s daft, isn’t it? If nobody knows what’s the matter with you and the neurologist wants to do an exam, obviously you need to be there but that’s not really the case for you is it?
I once asked my MS nurse the same question i.e about doing things over the phone or video link. She said no - something about guidelines required in person meetings. It is all a bit bonkers - all the Nurse of Neurologist does is ask me pretty much the same set of questions year in year out. I also asked if the questions could be sent to me by e-mail but No - she has to see me in person. I think it all comes down to NICE guidelines.
Ironically, I took part in some recent NHS virtual discussion groups about ‘Moving Forward Together’ in developing NHS services for the next 25 years in my Health Board area. The phrase ‘Patient Centred ‘ was scattered liberally in presentations along with virtual consultations but my oh my , the NHS is slow to catch up with developments.
It’s frustrating but also I suppose they have to be able to say the expensive drugs being dished out are actually going to somebody
I just didn’t want to miss the opportunity to ask questions but honestly stuck for any!
So much information out there and I know myself better than anyone else so feels like a 4 hour drain on me to be honest
My sister and I have MS and are under Salford Royal but have different Neurologists.
My Neurologist insists on face to face appointments even though nothing has changed and it lasts 5 minutes.
It’s an expensive waste of time and money in my opinion.
My sister since Covid has only ever had telephone consultations with her Neurologist.
Thinking of your post alongside those from folks waiting months on end for their first consultation does suggest an easy win viz system improvement, doesn’t it?!
Ive been relapse free 6 years, all MRI’s clear 6 years. My MS Neuro appointments are twice a year by video and annual MRI in person. Works for me. I’m also on Tecfidera.
