All day in A&E......

New diagnosis and before diagnosis
1

I’m currently under investigation / watch and wait for MS.

So I woke up and 6:30 and started the day as normal. Around 8 the room started spinning for at least 45 minutes. Immediately after half of my face went numb followed by my whole arm. I called my GP and was told to go to A&E. The initial thought was a stroke, fair enough…although one savvy junior doctor suggested that it wasn’t and it was probably linked to the inflammation in either my spine or brain. Ironically she was the first one I saw and could have saved me so much time!! Alas, four doctors, 5 hours and a CT scan later they decided that it was related to the inflammation and decided to call my neurologist to decide the next course of action. An hour later I was told that I shouldn’t have gone to A&E and should have contacted my MS team and specifically my MS nurse!!! I’m fuming as I was never told about any MS nurse or MS team. I told the A&E doctors all the time that I was happy to go home and contact my neurologist, but they didn’t want me to.

Anyway, apparently my MS nurse (which I don’t have) will be calling me tomorrow. What should I expect from this conversation?

Sorry for the rant… I just hate all of this…

2

hi

looks like they diagnosed you but didn’t tell you.

if they had followed the correct procedure you would have been told at an appointment, at the same appointment they should have introduced you to your ms nurse.

then offered a choice of 3 - 5 Disease Modifying Drugs (DMDs).

explain all this to the ms nurse when she calls and take it from there.

good old postcode lottery i’m afraid.

my ms team work from salford royal which is one of the main neurological hospitals.

they are very good but the pressure on staffing (shortage of ms nurses) is beginning to show.

so calm yourself down and prepare for the phone call tomorrow.

it doesn’t feel like it but the diagnosis is an essential step towards your new life as an ms patient.

honestly you will survive it all.