Hi all, I’m utterly new to forums, but my 16 year old daughter has received an MS diagnosis today by phone due to the Covid situation. Also due to Covid it’s very unlikely that she will be able to see a Consultant specialist for quite some time. As a parent I was just looking for advice on how to proceed and what information I should be giving her in regards to prognosis and treatment? I’d rather she wasn’t getting her information from Google and absolutely terrifying herself. Any advice at all would be greatly appreciated, thank you.
Hi, oh I am so sorry to read this…it is bad enough that adults get diagnosed with MS…I feel so sad for young people who are told they have it.
As far as prognosis goes, no-one can predict that with any conviction.
But as for treatment, I think it IS important for your daughter to be able to discuss that as there could well be something to reduce attacks and slow progression.
If I were you, I would ring the neuro`s secretary and tell her you would like to speak to a neuro ASAP about possible treatment.
The MS Society has a great range of free literature on all topics regarding MS. Have a look at their list and see if any could help.
Boudsx
Hello
I am sorry. 16 is so young to be given the diagnosis. You’re right to be seeking reliable sources of information about MS. Generally googling isn’t a great idea as it could give your daughter all kinds of wrong info and/or scare her stupid.
As Boudica said, the MS Society (ie this website) has good quality information - see the About MS tab at the top of this page. Also, the MS Trust has many excellent webpages / leaflets on virtually any aspect of MS you can imagine. For example: https://www.mstrust.org.uk/life-ms/young-people-and-ms
Of course, you (or your daughter) can ask us for help and information. We’ll try our best to help. You could also suggest your daughter has a look at https://shift.ms/ There are a lot more young people on that site, so she may find it suits her better than this. (We’re perfectly capable of talking to 16 year olds, but many or us would seem a bit geriatric to her!)
Best of luck.
Sue