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stumbler
3 years ago

@mumofmser , it’s good of you to join us on behalf of your daughter (or son).

It is a worrying time, as MS is one of those taboo subjects that aren’t discussed, until it arrives on your doorstep.

But, MS is now becoming a manageable condition. Medical science continues to press ahead with all manner of treatments now avaiable that can hopefully keep the condition under control. These advances also allow our medical professionals to identify the condition earlier and start treatment earlier.

The MS trust do a range of publications about all things MS, but here is a link to their “Newly Diagnosed” section, http://www.mstrust.org.uk/shop/products.jsp?catid=56 .

You need to learn about MS, so that you can prevent worry and stress creeping in. This can only antagonise the MS and is best avoided.

But, feel free to post your fears and concerns and we’ll do our best to answer them.


tracyd
3 years ago

@mumofmser

Hi *waves* welcome to Shift.

It’s shocking when the diagnosis is new, as with any condition when you google it you’re going to frighten yourself to bits.

The important thing is to take control of it, medicine is coming on in leaps and bounds and there are a lot of treatments out there which can slow the MS treat the symptoms of MS and give a life which apart from the presence of the MonSter is normal.

Teenagers are a challenge at the best of times, but living a healthy lifestyle (mostly) really does help, all those vitamins and minerals in the 5 a day really do help, as does regular exercise, fresh air and sufficient sleep (good luck with the surgical removal of a games console, getting the 5 a day into a teenager and getting them into and out of bed at a decent time for a healthy walk …… :-).)

The thing about MS, is nobody knows what to expect, there’s no ‘pattern’ for it. Everyone’s MS is unique to them, symptoms vary from person to person it’s not that everyone eventually ends up with all of the symptoms, some people go their whole lives with only a few which are annoying rather than debilitating.

The different types of MS don’t dictate a pattern or progression either, Relapsing Remitting doesn’t mean it’s the ‘okay’ type of MS, Progressive doesn’t mean it’s ‘you’re immediately stuffed it’s the end of the world’ type either

It is probably worth getting your teenager to keep a diary of some kind to track life – I don’t mean the Adrian Mole / Brigit Jones type, more a how did what I do yesterday contribute to how I feel today assessment. It’s easy to blame MS for things like physical and mental fatigue when if we’re being really honest with ourselves there are lifestyle choices we made that are far more responsible
My entry for this morning says :
Was tired when I got home from work last night
Had Thai food delivered – lovely but not many vegetables
A bottle of wine
Went to bed at midnight
Analysis – I was already tired the wine gave me a second wind so I stayed up late – I’m tired again now because I stayed up late and my heads a bit fluffy from the too little sleep and too much wine
Conclusion – I am an idiot and have nothing to blame but myself
Response – eat something good tonight, drink water not wine go to bed at a respectable time
Reality – there is a lot of the Thai food left so that’s going to be dinner, I’m working from home on Friday so I don’t have to be up at EEEK o clock and thai food really does taste better with a glass of wine …. I’ll probably go to bed about midnight as usual and I am an idiot but that’s not the MS’s fault 🙂
This place is great for talking to people about MS, Life in general and is a great educational resource. We are a sociable bunch and pretty much house trained 🙂
Enjoy Shift, give your teenager a hug and tell them it’s not the end of the world, it’s blooming (see I didn’t use a bad word in case the teenager is reading too 🙂 ) annoying and inconvenient and for me I view it as a battle. I will fight MS with every weapon I have, I will live my life to the full and to hell with this MonSter I’m going to kick it’s ass 🙂

Tracy xx


angelbum
3 years ago

Hi there and welcome to community this is a great site for information .


mumofmser
3 years ago

Thanks for your support. I hope to get my daughter to sign up and get involved when she is ready. Stumbler you mentioned stress and given her second relapse is still resolving and possible treatment with alemtuzumab on the cards I am of the opinion to not worry about this years AS levels. She is so far behind (fatigue etc now all explained with diagnosis) the last thing she needs is to worry or be pressurised at sixth form. Saying that I don’t want to make excuses but was going to ask college about dropping one of her subjects. Your thoughts appreciated.


stumbler
3 years ago

@mumofmser , definitely have a word with her college. MS causes problems with fatigue, cognition and other things, which would obstruct her potential success in exams.

Universities are well-versed in making allowances for conditions like MS. I would hope that the college would offer something similar.

The stress caused by these exams may also be contributing to the problem….


kirstyscotland8
3 years ago

@Jupiterjumper might be able to help! She is super lovely 🙂


allie
3 years ago

Hi there, I’m 20 now but diagnosed at 16. When I got the diagnosis my mum was a typical mum and drove herself crazy spending hours every day trawling the internet, reading every horror story and every success story and putting me on every single vitamin supplement and qwack idea out there! I knew she wanted me to take an active interest and read things and join things like shiftms but I just wasn’t ready and had to deal with things in my own way. I just got frustrated with my mum for forcing me to think about MS when all i wanted was to get on with being a normal teenager! When I did eventually turn to shift ms I was diappointed to see that there weren’t actually that many people my own age to talk to, and I did struggle with it. So if there’s anything I can do to help now, feel free to put her in touch with me!

Has your daughter told her friends? My school were really supportive but I didn’t tell my friends, just because everything was so serious and MS focussed at home, at school I could escape and act like nothing had changed. Over time I adjusted and stopped being in denial but it probably took a good 18 months for me to be comfortable in the new me!
I believed at the time (and I stand by this now), that the MS diagnosis affected my parents far more than it affected me. I was heartbroken at how I could see it was upsetting them, they were so worried for me! I was never that concerned about myself!!!
The only thing I can say now is, I went through hell being diagnosed with MS at 16, but I went through it with my mum and dad there for me every second no matter what decisions I made about how to approach it…I now look at my other friends and know they will never have as close a relationship with their parents as I do with mine! Even though I’ve left home now, i know that we will always be so unbelievably close because of what we went through together – my relationship with my parents is one of the many things I am grateful to MS for! I am sure you will find the same thing with your daughter in time too! 🙂 xxxxxx


mumofmser
3 years ago

Thank you Allie I can’t believe how similar we have been – this just about sums up the way things have been around here and it was quite reassuring to read your post. I know as a parent I am worrying more and my daughter she keeps saying will everyone stop acting like I am dying ! Thank you so much for sharing this with me . I will when my daughter is ready sign post her to ms. shift and yourself. X


Anonymous
3 years ago

Hi @mumofmser I hadn’t been on in a while and was just checking to see what I’ve missed when I came across this post, I was diagnosed just after I turned 16 with rapidly evolving/highly active RRMS. I’m 18 now and I only recently began seeking out other MSers, so if your daughter wants to seek someone out just give me a message at any time! It’s totally normal to just focus on self-management for a while first 🙂 I hope you are all ok xx


believetoachieve
3 years ago

Hi @mumofmser Im 24 and was diagnosed last year. Where are you from? Im in brighton…let me know if I can be of any help x


mumofmser
3 years ago

Thanks for getting in touch it’s been really lovely to know there are people out there. My daughter isn’t really ready to know more at present. It’s all a bit surreal as she is well again and not yet started any treatment. I am sure she will be in touch when reality kicks in. Meanwhile I am learning lots from you guys and sharing it with her.


mumofmser
3 years ago

Hi everyone just a quick update today is day 2 of Lemtrada and all going well so far. Can’t believe where the time has gone since I first posted. Thank you all for the support advice and encouragement you all offer.

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