Last reply 1 year ago
Newly diagnosed

Hi all my daughter was diagnosed with ms just before Christmas ( so very new) she is 23 and had a baby in september . we have an appointment with the ms nurse in 2 weeks so hopefully no more then. I’ve joined this site amongst others so I can gain as much info as I can to help my daughter and her partner as much as I can. I’m lead to believe this appointment is called a newly diagnosed appointment then there will be a follow up with regards to treatment, is this most peoples experience ?

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stumbler
1 year ago

@quillie , it’s good of you to join us on behalf of your daughter.

Yes, this will be a “voyage of discovery” for all of you. It does seem to be the procedure following diagnosis, to give the patient time to comprehend what has been said and consider what questions they have.

Be wary of random searching on the internet. This can locate horror stories, which are completely out of context. It’s always best to stick with reputable websites like the MS Trust and MS Society.

Both organisations do a range of publications covering every aspect of MS. You’ll probably find the “Newly Diagnosed” section of the MS Trust’s website, https://support.mstrust.org.uk/shop , useful.

And, of course, you can pose any questions on here.


quillie
1 year ago

Thankyou so much for your reply, I feel a bit lost on what to do for her, she seams to be coping with the news far better than me which makes me feel bad x


stumbler
1 year ago

Different people have different reactions to a diagnosis of MS. Some see it as explaining a raft of unexplained symptoms whilst others are in shock regarding what it means for the future.

It’s understandable that you are concerned. The job of a parent never ends, so it goes with the territory.

Your daughter is young and medical science has come on in leaps and bounds to make MS a manageable condition. She probably needs a bit of time and space to absorb what’s happening, so use the time to educate yourself about MS for when, and if, she wants to talk.

Hope this helps


gates1989
1 year ago

Welcome @quillie, this is a great place to come for opinions, support or even a bit of a rant!
I’m Cedelle, and I was diagnosed with ms when I was 18, similarly to you, my mum struggled more than I did! I think it is such a personal experience to go through, both you and your daughter have been dealt a shitty hand and for different reasons. I think my mum struggled because for the first time in my life, this was something she couldn’t fix. And she hated seeing me go through such an emotional roller coaster and not be able to answer any of my questions because she just did not know the answer. I struggled the most with people assuming they knew how I felt, so if I went to my room for a few hours, someone might assume I had the hump or I was struggling with the diagnosis. When in fact, maybe I just felt a new symptom and maybe I just wanted a bit of reflection time to myself to work out what it was! I’m now 27 and still on my feet, working and loving my life, and it can be that way for your daughter too. I hope this is encouraging for you, always happy to chat if you fancy it x


quillie
1 year ago

Oh thank you so much for that reply that’s really perked me up, and yes your right I feel helpless that I can’t fix it, but I am getting my head round it now, appointment with the ms nurse on Monday, I’m a bit worried about my daughter not taking things in as she’s so tired with the baby, and to be honest shes the most laid back person I know, but her partner over thinks everything !! Thankyou again for your reply and will post how we get on with the nurse, glad you are doing so well and enjoying your life. Xxx


lucyh
1 year ago

Dear @quillie

I’m sorry to hear your daughter’s news. My school friend was diagnosed at a similar age (although she clearly had it as a teenager) and I’ve had it since my thirties. I think the best advice to give you is to write out the questions you want to ask and tick them off as you ask the MS nurse about them. I’ve left the MS nurse’s office on many occasions and thought: dang(!) if only I had asked her about X or Y.

Some questions might be:

How will the MS be monitored?
What type of MS is it?
Is there a treatment and will my daughter be offered it?

Your daughter might also have questions about letting work know (if she works outside of the home) and indeed if this is actually necessary.

Anyway, these question might not be the ones you want to ask, but hopefully they will prompt the ‘real’ questions you might have sitting at the back of your mind to spring forward. The not-knowing is awful, it’s better when people are straight with you, as the news is often more positive than you imagine and as @stumbler says, stay away from the ‘horror stories’…MS expresses itself in many different ways, as we all know too well!

Take care, best wishes, lucyh xx


quillie
1 year ago

Thankyou we are so new to this,jjust finding our feet, consultant advised her to stop work,cos the job she had was so demanding, yes we have a questionnaire for the ms nurse, me and her dad are just thinking now about the cold feet and lazy eye she had as a teenager, could it all be related x

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