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Hi this is all new to me

Hi, My name’s Nickie - I was diagnosed with MS last Oct (2020) a month after becoming a grandmother for the first time. I know a bit about MS as my mother had it severely and my younger sister has it. I have to admit i’m scared about the future. I’m a Christian so not scared about death or eternity but it’s the bit before then. I already feel that I will not be driving for much longer and am currently a care worker and am concerned that that will need to stop sooner than I want. I hear that some people can carry on life as pretty much normal for a long while but feel i’ll not be in that category. I saw a great Neurologist but only 1 appointment a year feels daunting.
Initally on diagnoses I was ok, just now 6 months on it feels like a life sentance that I can’t stop thinking about.
Sorry to sound so negative.

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I am very sorry about your dx. As I understand it, a family history of MS certainly increases the risk of getting it, but does not predict what an individual person’s MS will be like. In other words, you should not assume that your MS will be like your mother’s.
Alison

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Hello Nicki

Welcome to the forum. I too am sorry about your diagnosis. It must be a bit unnerving having watched your mother getting more and more affected by the blasted disease. At least to balance that out you have your sisters MS to consider.

In many ways, MS is a bit of a life sentence. There’s no cure (yet - maybe one day?) and it’s life long.

But, so many of us managed to live a very ‘normal’ life for years after diagnosis. For me, it took more than 10 years before I began looking disabled.

Do you have an MS nurse? Perhaps if you don’t you could get the contact details from your neurologists secretary? Talk things through with a nurse and maybe that will help?

Otherwise, keep talking to us on here. Many of us are a bit ‘thrown’ by the new website, believe me it is very different to the old site that we were accustomed to. But clearly little by little, we’re going to get to grips with it and will be able to answer you.

Best of luck

Sue

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Thanks Sue for writing. I have a ms nurse but she seems to want to talk and not listen, she isn’t very friendly either, perhaps I’m expecting too much.
I think I will value this site, being able to speak to people who know what i’m talking about.

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Thank you Alison. x

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Hello Nickie! I am sorry to hear about that. It can definitely affect our perception if we had a someone close to us with the same condition, but I would advise that you try not to think of what happened to your mom and now sister but rather focus on yourself. Neither of us knows much we have left of a normal” and functioning life but I have learned to enjoy whatever I have rather that stress about what will be. Sending lots of love and positive vibes your way! :slight_smile:

It’s a real shame when your MS nurse isn’t the best at supporting you with your new diagnosis. Listening is surely part of their job. Tbh mine isn’t the most sensitive nurse either, but when you are years down the line with MS it’s less important.

Keep talking to us. If you have specific symptom or drug related questions, try typing in a word to your internet browser (maybe fatigue, spasms drug therapies - whatever bothers you) plus MS Trust and you are likely to get a relevant web page. Or of course ask us, just remember we aren’t specialists, we’ve generally only learned by personal experience.

Sue

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Nickie,

Whilst your MS nurse does not need to be your best ever friend, they really should be able to listen to you so they can provide the most appropriate support. I would also think that an empathetic nature would be useful in the job. I am certain they must have tough days and their own issues, but professional courtesey should be on offer. Good luck
Mick