Hi. I am consumed with crippling anxiety about my daughter (20) who has been told she possibly has MS after mri and is waiting for lumbar puncture, but with covod all these things are suspended. How do I overcome my own paralysing fear for her in order to support her? I feel desperate for her. Anyone out there waiting for results I feel for you. Does anyone have any tips or suggestions. It’s so hard.
Hello anon…as a mum I worry like crazy about my daughters and they are 48 and 43!
It`s built in to us when we become mums.
Maybe if just be there for her and learn a bit about how MS can be for some, but remember it isnt the same for everyone. The MS Society has some great free literature you can order.
Life with MS can still be a good life, with the right support around you.
My daughter has lupus, plus other stuff and today she moved across country after living back home for 4 months.
Once a mum, always a mum eh?
Boudsx
Thank you Bouds I’m grateful for your insight and thoughts. Xx
Thank you Bouds xx
I would feel the same as you, very worried about my daughter. I really hope that she is OK. Just to say I have a relation with MS and was diagnosed young, but got married, had kids and now looks after her grandkids. She had PPMS too. It made me realize it’s very varied. Also if she does have MS there do seem to be some really good disease modifying therapies which work best if caught early.
And this is if she does have MS. Which the likelihood is that she doesn’t - as most people sent for lumber punctures do not have it - but it’s important to rule it out. I am not someone with MS by the way - just someone who asked a lot about it when I also had symptoms! So sorry if this isn’t helpful at all. If you can bear it - I’d just be there for her and be matter of fact. I know recently when I was worried it was quite nice being around people who were just normal and distracting.
Helen thank you so much for your reply, it’s really helpful just to know there are others out there who understand. And also reassuring to hear of your relative’s experience as fear of the future is the real paralysing one. I hope your health is good now. We just have to wait for a bit for covid to calm down so she can get the lumbar puncture xx
Hey there I was diagnosed when I was 21 (22 now) so the age is very close to your daughter’s one and I hope I can help you somehow. Well firstly I’m gonna speak as if she was diagnosed already so its easy to put it into words, but she hasn’t been diagnosed yet so never stop to hope for her:) I would suggest you firstly to look for reliable information about the disease! It’s so discouraging to navigate through tons of information and not been able to tell what’s reliable or not. So maybe you could start from something you know it’s reliable! Then I would also suggest you to look for an ms specialist who makes your daughter comfortable and who is prepared. This way you are also gonna be more “relaxed”. If you know someone who is prepared at their job treats your daughter is gonna be way easier for you as well! It’s been one year since I was diagnosed and my parents are much more relaxed. At first I could tell they were desperate. Once you find a neurologist you trust you realize it’s not your job to think about how to treat ms but your specialists’ job. What’s her job is to respect the neuro directions and try to learn to live well and happy, even with ms. Also if you can I don’t think it’s wrong to share your daughter that you care and worry but it would be better if she doesn’t get too overwhelmed altogether. And also please don’t worry really! With ms there is so much hope! There are so many new treatments and surely you daughter will find the best for her. I really hope to trasmit a little bit of the hope I feel every day! Stay close to your daughter, it’s gonna be fine. Sara
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Hi Sara, I’m so grateful to you for taking the time to share your thoughts, it’s so helpful to hear those words from another perspective. She has spoken to 2 neurologists, the last one was kind and did not paint too bleak a picture but now we just have to wait to get the lumbar puncture and take it from there. I hope you continue to do well, all best wishes to you and your parents and again thank you for helping, I can’t tell you how much I really appreciate it as I feel we are in limbo at the moment, hope and optimism are very important and sometimes it’s hard to keep them with you x