Last reply 2 months ago
What now ?!

I was diagnosed last week with remitting and relapsing MS , I’m now waiting for all the next steps MRI scans to hear from the specialist nurse and for the hospital to send me appointments, so I’m in that limbo stage right now , is there anything I should be doing while waiting for all of this In terms of letting appropriate people know what I have been diagnosed with , I just feel like I’ve been told what I have and been sent on my way.

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3 months ago

i don’t think there are any rules for who to let know, and it’s definitely a balancing act of figuring out who needs to know, and who you need to know.

it sort of depends on how you’re affected,
it might be useful to let work/school/uni etc know, so they are better able to support whatever needs may arise, but again, I think this should be on your terms, and when you’re comfortable or a need arises.

it was weird when I told my Uni people, they sucked a bit, but later on when I told my work they were really supportive… so it can get a bit subjective.

as far as driving licences go, i was annoyingly placed on a 3 year licence which I have to reconfirm every time it elapses, which is more of a nuisance than anything, with the paperwork, but my anecdote is that I’ve not had issues, other than getting paperwork together.

you may be eligible for grants, or pip (UK?)… again, depending on your case of the very variable thing that is MS.

I hope this is of some help – if you’ve got specifics then the guys here are pretty responsive, it’s a good resource you’ve found here!

3 months ago

Kara, frustration is sometimes something we all suffer but it would appear that you are waiting for all that is needed to diagnose you, I remember being a little frustrated but having a Sister that works at the hospital where I am treated, soon put me in my place !!! But make sure you have a good contact with an MS dedicated nurse and sit back and wait. is my monthly blog, have a read it may help x

2 months ago

@kara_thomson , just give yourself time to understand what this might mean to you and what questions you would like answered. List these questions down so you don’t forget them.

Have a browse through the brochures/info, behind the “Newly Diagnosed” tag on this webpage :-

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