Don’t know where to start feeling overwhelmed

Welcome and introductions
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Neurological appointment confirmed MS now being referred for MRIs with dye to confirm age of lesions in Brain & spine, bloods & lumber totally forgot to ask when this might be felt initially this might be urgent but now doubting this tbf it’s only been a week & I know different areas will have different waiting time but feeling increasing overwhelmed & have so many question I almost don’t know where to start

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Hello @selinafrisken i think that all,of us on the Forum will recognise those days of feeling lost and confused during after diagnosis and will sympathise with you. From what I remember it all goes by in a bit of an alarming blur.

I didn’t have additional MRI scans so can’t share any experience on that and how long I had to wait.

It’s 19 years since I was diagnosed and 19 years of experience of having MS. Do feel free to ask me any questions you have.

One thing I can suggest is that at your next appointment whatever it is take a list of questions with you along with a pen and paper and a friend. Even after all these years I can come out of appointments and not remember much of what was said and/or sighing to myself for not having asked something!

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Hi Selina, It is a lot to process all at once and everyones journey is a little different so it’s hard to get concrete answers.

In my journey, I got lumber before diagnosis so can’t speak to that. I had my MRI with contrast 8 weeks after diagnosis appointment. The letter to confirm MRI appointment was booked came through about 3 weeks after diagnosis appointment so these things can take a bit of time and does depend on where you live.

if there is a number on your letter for neurologist appointment, this may be to the secretary. If not you can usually get through by calling hospital switchboard. You may get through to a voicemail. It could be worth calling them to ask as they might have some information on if/when these have been requested. Sometimes your hospital portal or nhs app also has this info so worth a check on there too.

hope you get some information soon!!

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Thanks I’ve been obsessed checking the portal & your post has given a rough guideline

I will try the secretary

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Thank you I will take on your advise & write down all my questions

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