Last reply 4 weeks ago
Just diagnosed 15yrs old

Hi, I have joined as my 15yr daughter was diagnosed with RRMS a week ago. I’m trying to get my head round it and looking to see how best I can help her. She is not ready to seek this forum out at this moment in time but hopefully as we move forward, she will.
We have an amazing neurologist at Great Ormond Street who is very straight talking which we both appreciate. Any help and advice would be gratefully received.

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keepsmyelin99
4 weeks ago

Hi @lilian

I’ve just been diagnosed myself (although I’m a bit older at 20 years old). It was so lovely of you to join the forum to help your daughter – she has a wonderful Mum in you 💕

I’ve found a great thing about this forum is the fact that you can speak with people close to your own age, situation and experience in life. If at any point your daughter wants to get in touch, I’m only ever a message away 😊

Tips I can think of for helping her aren’t much different than you would usually treat a teenage girl: just chat if she wants to chat but understand that sometimes she’ll want space and time to process things herself. The most important thing for both of you might be discussing independence, and meeting with friends. My own mother likes to make sure I’m safe and comfortable when I’m not at the house but sometimes I feel she wants to wrap me in bubble wrap 😂 At the end of the day, we know our mothers love us and that’s the whole reason you joined this forum! 😉

If there’s anything else that’s more specific that comes to mind, just message or post and I’m sure someone will reply swiftly. I hope this has helped and I wish you both the best of luck!


lilian
4 weeks ago

@keepsmyelin
Thank you so much for you’re reply, everything is still very new and raw, especially for my daughter. She is still recovering from her second relapse, we have only just finished 5 days of steroids.
She is seeing a psychologist tomorrow so I’m hoping that will be beneficial for her in terms of accepting this. I’m hoping she will join soon as I think it will help her.
We are looking forward to her 16th birthday in two weeks and I’m hoping to arrange a night out with her friends as a surprise.
She is starting on DMD’s in September .
Thank you for the support, there’s not much out there for children/teenagers with MS so finding this forum will be very beneficial.


merfield
4 weeks ago

@lilian I’m one of the oldest on here if not THE oldest and it always saddens me when someone as young as your daughter is DXed with MS. The good news is that treatment has come along in leaps and bounds even in the last 5 years so there’s a good chance of a cure in the not too distant future. The leading light in MS is Professor Gavin Giovanoni who is involved in research and all things MS. Try putting his name in your search engine. I wish you and your daughter resilience and patience to enable you both to adjust to living with MS. Don’t let it get you down! We are here to help each other through the more challenging bits so when and if she’s ready – we’re here 😊👋🏻 xx


lilian
4 weeks ago

@merfield
Thank you for your reply.
I am very hopeful for the future.
I will definitely look up the professor you have named.
My daughter is going to be the youngest person to go on ocrelizumab , having read up on it , I’m keeping my fingers crossed.
The biggest challenge has been fatigue, I’m hoping that will improve as it’s her GCSE year.
Thank you for your support.👍


keepsmyelin99
4 weeks ago

No problems @lilian !

Wow – 16 years old 🎉 I hope she has a great day and a big celebration. And I hope the psychologist appointment goes well too.

I’ve just finished my 5-days of steroids recently too (snap!), and I’m already noticing improvements, so hopefully she should start noticing them soon too! They definitely sound like they’ve got a great plan of action in place if Ocrelizumab is on the cards for September. 😁


emmajoanne1
4 weeks ago

Hi Lilian,

Firstly, I’m sorry your daughter is going through this at such a young age. It’s not easy for anyone, let alone someone who’s still trying to work out where they belong in this world x

This forum / community will help you and your daughter so much with questions you have x

I follow a neurologist on YouTube you may find useful – he posts videos explaining MS, symptoms and treatment and I’ve found him to be extremely helpful. He explains all the medical terms etc which can help with our understanding. His name is Aaron Boster x

ShiftMS offer a buddy system for newly diagnosed people which is definitely worth your daughter considering xx

Emma


vixen
4 weeks ago

Hello @lilian, big welcome to you. There is lots of support on here, the search button above is great for tips and information. I and my sister have MS. My daughter got diagnosed with ITP, another autoimmune condition the week before her sixteenthbirthday, so I know just how you feel as a parent. Make sure that your daughter’s SENCO is made aware of this straight away, there are all sorts of concessions and Access Arrangements that can be put in place for her for exams, even to support her through mocks.

Starting with Ocrevus is the best possible course of action. It only got approved in the U.K. last year, we are lagging behind Europe and the States. And seriously, the rate at which research and medication has sped up in the last 10 years is nothing short of phenomenal.

Stay strong, but be open to receiving and accepting help too. You will be OK and so will your daughter. There are a few very young people on here when your daughter is ready to join. Lots of love to your family x


itsmewithms
4 weeks ago

Wow- that is an early age to be diagnosed and hopefully she can use the time to her advantage. Keep in mind that the earlier you start DMT the earlier they can help you and diet and exercise are another two key components to how you feel and what you can do.

Good luck to you and her-


nutshell88
4 weeks ago

sorry to know that she’s so young
personally I was diagnosed age 17 2004
first thing i decided is to get bachelor from uni most important thing is continue study it gives respect pride of strength also gives her chances to work and have stable income

i never started any treatment first three tears took rebef two for two or three years after and its suicidal done more harm than benefit
MS not the end of the world x
Two-thirds of people who have MS remain able to walk,

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