Forum

interesting spms diagnosis

Everyday living
#1

Hello everyone hope all is good

Was at hospital today and MS nurse specifically came to see me. She had booked me in for steroids to help with right hand motor function and overall balance as I walk with a crutch. I came off rebif after an especially crap time on it which may have contributed to this sp diagnosis. Only knew this update as a referral form had a handwritten addition of spms diagnosis written by my neurologist. My wife isn’t convinced that its kosher as I’ve not seen him for a couple of months.

Can a diagnosis be given by proxy? Perhaps she’s right, but I presume that he’s gone over notes etc and formed his opinion objectively? All a bit of a whirlwind atm tbh… made me write in acronyms offs… grrrrrr

Best wishes and nice friendly hugs to all, for (as fluffyollie, not ‘FO’…)xx

#2

The last bit didn’t make sense… sorry I mean meant to sign off as ‘fo’ not ‘for’.

#3

ha! ollie i write and say nonsense all the time.

sorry if this news has upset you.

just tell yourself it’s only a label.

blessings

carole x

#4

Yes well, never mind the ?SP label. You just hurry up and respond well to the steroids (you are having steroids, aren’t you?) and see what they have to say then. Ollie, the steroids aren’t interested in what the nurse says - they’ll just barge in there like the fire brigade and drench any inflammation they can find and no questions asked. They’re not fussy. I am sorry that you have had this bolt from the blue - you have enough on your plate with all the anxiety about trying to regain function after a relapse. Most of us who have had RRMS for a while wonder about transition to SP and so do our clinicians. There is a recent thread on here about what a grey area that can be. Alison

#5

Hi fo

I hope the steroids do the trick and your symptoms improve soon.

You can always contact neuro secretary if you want clarification on the handwritten update. I would but that’s just me. I like to take ownership of my own body…where I can lol. Or has the MS nurse explained things?

Good luck xx

#6

Hi Ollie

Not the best way for this information to be communicated, well in my opinion anyway.

As others have said it is only a label. Nothing has changed, you are still you and your MS is still your MS.

Take care

Anne x