Hi, I kind of feel a little lost and not sure where to turn or what to do. My 17yr old daughter has been diagnosed with Relapsing and Remitting MS after 2yrs of symptoms. She has lock down and I join tonight to see if I can find any peace and answers here. I don’t know what to say she is so brace and I want to help but I feel like I want to cry and stomp my feet and ask why?
sorry to hear your news, I know you will be scared of the diagnosis and for your daughter’s future.
I don’t think there is a ‘why?’, or at least no one’s found it yet. But of course you want to stamp your feet and cry. I can understand that, I’d be just the same if it was my daughter. In fact when I was diagnosed my first question was ‘Will my kids get it?’, I was terrified that their lives would be blighted, not by me having it but by the chance they would get it too.
Sorry, I don’t know what ‘she has lock down’ means, so a few questions if I may -
How is your daughter coping with the news? Has she seen the neuro yet and does she have contact details for her MS nurse?
Have DMD’s been mentioned? What support does she have? Has she been prescribed medication to alleviate any symptoms?
What help do you need? We are here to hold your hand; let yourself get used to the news - even if you have been expecting it, it is still a shock.
Try not to panic. Stay off Google. Talk to your daughter when she is ready. Let her take the lead with telling others. RRMS is not a death sentence, and nothing to be ashamed of or kept quiet. But it’s up to her who is told and who is not.
If your need more information start with the MS Trust publications, and of course come back here, as many people are experiencing the same things and we are quite a nice lot
How frightening for you. For her too of course, but sometimes it’s actually worse to be the parent or partner of someone diagnosed with a degenerative illness. She’s very young as well, so to you she’s still your child.
As Ang said, have a look at https://www.mstrust.org.uk/ They have a whole load of useful information, Hit the tab marked ‘Understanding MS’ and you’ll see there are a whole load of subjects there many of which will come in handy.
There are now many disease modifying drugs (DMDs) available, which are designed to reduce the number of relapses and the severity of relapses. I’m sure she’ll be started on one soon. She will also have an MS nurse who will be invaluable as a source of support and information.
And feel free to come on here, there is a forum for carers of people with MS, but this forum is all inclusive too. And we are always happy to join you in yelling, shouting and generally complaining that it’s not bloody fair. We will also be happy to try and help with any questions you or your daughter want answers to.
What might be of interest, especially for your daughter is https://shift.ms/ It’s another forum for people with MS, but it has a lot more young people on it. There are a fair few young people on here, but quite a few of us tend towards middle age rather than teens and twenties.
look up your nearest ms therapy centre (should be on the outskirts of your nearest city).
these places are wonderful.
a large area where people sit and chat with a kitchen close by for making a cuppa.
brilliant range of therapies to try such as HBOT Hyper Barric Oxygen Therapy, electro magnetic bed, massage, chiropody, physiotherapy, and many more.
loads of useful information such as claiming benefits.
also carers and family members are welcomed and they get as much out of it as the person with ms.
however make sure it’s what SHE wants.