Last reply 2 years ago
Diagnosis

Well saw my neurologist yesterday and he has given me a diagnosis of MS !
Really struggling emotionally today and not sure why? It’s not as so I wasn’t expecting it?
So many questions going on in my head 😔 he is referring me to a MS Nurse.
We did talk briefly about DMT’s but said to discuss with nurse.
My quandary is whether we tell my children? They are 21 & 17 the eldest has just finished Uni and about to hopefully start her new life. My husband doesn’t really want to tell them but she isn’t stupid and will soon start questioning things I’m sure 😉 What do u good people think?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


marcyg921
2 years ago

Hi
First of all sorry to hear about the diagnosis, like you I knew for months I had it before my official diagnosis but its still not a nice thing to hear and the emotions you’re feeling are perfectly normal. Now as for if you should tell your children, well I don’t see why not. The MS journey is long but the journey is so much easier with the more help you have and your children are old enough to learn about MS and there’s no reason why they can’t live their lives while also helping you out when needed. Plus you’re absolutely right when you say that they’ll eventually notice somethings up so but at the end of the day, the choice is yours.
Best of luck with everything and we’re all here to help you out if you have any questions or just want someone to talk to.


grandma
2 years ago

You have just had a big shock even though it was sort of expected. Sit back, take a deep breathe and dont worry. Stress is just about the worse thing going for ms, so
I know it’s easy to say but you won’t change anything that has happened and you might change the future so be careful. As far as the offspring are concerned, only you and the other half can make that decision but neither of them are babies any more and they will need to know eventually. Will it change their lives? probably not, I am sure you will not let your daughter change her plans for her future and your son has to learn that it’s your disease and you will deal with it, that’s not his job, and as long as you make that clear, but let them both know that a bit of help and a bit more consideration wouldn’t go amiss! MS is no longer the life sentence it was, I’m so glad you found us early, there is no such thing as a silly question with ms so feel free to have a question, a moan, a rant, a cry, a celebration, whatever you want, we don’t judge and we’ve all been there before so you won’t surprise or affect us in any way so feel free to keep posting, and good luck with your families future😍


vixen
2 years ago

Hello @dmt727 nd welcome. Gosh, if you scroll down through the posts there seem to have been a flood of newbies coming aboard over the last week! I was diagnosed last year and so was my sister 🙁 and we both have kids.

My theory about disclosure was this…..I strongly felt the need to be sure how I exactly felt about my diagnosis before telling my daughter ( young adult). I wanted to process my 5oughts and to focus on regaining health and wellness first. That way, when I told her a few months down the line, I could almost play it down a bit to soften the blow. Bu that stage too, I was much more familiar with what my routine and needs were. Diagnosis is such a massive shock that the protective side of me wanted for her to see that I was OK and carrying on with life. Does that make sense?

Stay strong, you will get through this and there is great support for you on this site. BTW, steer clear of over-googling, and stick to official sites for your research. MS Society or the Barts blog is great for researching DMTs x

That’s my story anyway. As with everything about this ####### condition, everyone is different and has another story to tell.


icekat
2 years ago

Sorry to hear about your diagnosis. You have probably been living wit MS for years just not knowing and more recently knowing something was wrong but not knowing what it was. It was a shock for me to find out but soon I realised having a diagnosis is much better than not knowing. Soon you will be given treatment and hopefully things will get easyer.

I got my diagnosis from someone who just told me what it was and said the MS nurse would be in touch. I was shocked so did not ask many questions and he just sent me home. Anyway the MS nurse that I have been seeing for the last 8 years was fantastic. They really are worth their weight in gold. Make some notes of things you want to ask the MS nurse. Chances are you wont remember everything if you dont.

As for telling the kids. I have not got children but I told close friends and family. I choose not to tell many people for instance people at work etc. Some people you tell will treat you differently. You hit your foot on something and have a slight limp and people assume it is the MS. I went to my GP with ear ache and he insisted it was the MS. I asked him to at least look in my ear and it turned out to be a ear infection. I think its up to you who you tell and your kids are old enough but make sure you give yourself time to get to terms with it and research it. That way you can reasure your kids ifvthey have questions.

Good luck and keep posting.


cameron
2 years ago

I agree that it would be better to wait until you’re clearer in yourself. Presumably what you want to share with them is how you’re tackling it all. The learning process will start when you meet the MS nurse. You could involve them in that process, but I’m guessing that the most positive way forward would be to be ‘launched’ on your chosen treatment first. At that point you can relay the positive messages of your MS nurse – yes, they will be positive! You’ll have started the process of taking back control of your life and you’ll know a lot more about MS itself – so no need for your kids to go to Dr Google! xx


mccfev
2 years ago

Just to say it takes time to adjust to the idea of MS but there are some good meds out there and more being developed all the time. I was diagnosed 18 months ago and am still processing it. I have just asked my 21 year old who has also just finished uni. He said he is glad he knows. Telling him was a bit of a no brainier as I lost sensation in my legs first episode and the second major one couldn’t walk properly for three weeks. Be kind to yourself as you get over the shock and then do what feels right.
And I wish I had found this forum as early as you. Totally new to this game!


dmt727
2 years ago

Thank you all for your replies and support x Lots to mull over 🤔


lightning87
2 years ago

Hey, just to say that I was just diagnosed yesterday and chose to tell me 13 year old son today. I didn’t make a big deal of it which I think helped. He took it well and I offered him a book I got from the clinic that explains everything and answers a lot of questions they may have. He didn’t really question anything and seemed fine with it. I suppose it depends on what they are like but I’m glad I told him.
My daughter is 4 so won’t understand but I will tell her when she is old enough to understand a bit more.
It is really up to you what you think and want to do. How do you think they would take it if you didn’t tell them and found out some other way? If you think this would make them more upset, I’d be more inclined to tell them myself but it really is your decision. You have time to come to terms with your diagnoses before you need to make any decisions.
Xx


stumbler
2 years ago

The primary concern for young children, when they’re told Mummy (or Daddy) has a medical condition, is to reassure them quickly that Mummy (or Daddy) isn’t going to be joining the angels anytime soon. 😉

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.