Last reply 1 year ago
what a difference a few minutes makes

At 3.30pm this afternoon I was sitting in the waiting area puddling about on the mobile phone.
At 4.30pm this afternoon I walk out of the hospital with my ‘Making Sense of MS’ folder and info about Tecfidera.
You’ll understand, that’s all I have to say just now.

pikilily x

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1 year ago

That’s understandable, @pikilily .

Just allow yourself time to take this all on-board. We’re all here to support and advise, when you’re ready.

1 year ago

My husband is away in China at the I can get plenty of time to think…and mull over how I feel.. without worrying about him. 😊😊
Emma T x

1 year ago

Oh @pikilily! You are me, writing this post a year ago! We are a similar age, same shock levels, clutching info on Tecfidera (which I’ve been taking for 8 months). I am right there with you. Who could expect something like this to happen? So here I am, one year from the anniversary of a lumbar puncture, one year ‘wiser’ and yet none the wiser in many ways. At this point, my life is just fine, because having gone through the shock and associated processing, I have made so many changes; to the way I eat, think, manage stress, manage being around people. MS is a really bad draw. But, on this site I have seen posts from the parents of 10, or 13 year olds who have been diagnosed and I feel so grateful that I’ve come this far through life without being too unfortunate. So yes, the diagnosis coming later on is a massive shock. But the MS today is nothing like it was when you and I were kids and came across people with it. You need to do whatever it takes to support yourself through this time. Please send me a friend request if you’d like to chat more, happy to help however I can. Take care x

1 year ago


Emma – I am confused as to why you were given info about Tecfidera. My understanding is that is for RRMS. But your age is just below mine; the age category for PPMS of which Tecfidera does not help. If I may suggest – wait for the Spinal Tap & MRI results. Knowledge is power when dealing with this disease.

Life is a journey & we all know the destination. Have fun along the drive… 😉

1 year ago

@edmontonalberta …hiya. This was a meeting to get the results of the MRI and the spinal tap.. along with a discussion about the symptoms. RRMS is the diagnosis. So the tecfidera info is appropriate.
Cheers Emma x

1 year ago

@pikilily My bad – I read your “not updated” profile information…

I don’t know much about RRMS so I can’t help since PPMS appears to be completely different than all other variations of MS. But I learned a lot while losing my first wife to Scleroderma 23 years ago.

Her positive attitude kept all her friends around; I adored Donna until she took her last breath. I follow what I learned from her – my network of friends & family remains strong. That is all I need to get through life…

1 year ago

Ohhhh yeh, sorry… I haven’t updated my profile…sort of the last thing on my mind at the moment.😉
I will jump to it..later this morning. It’s 04.30 at the moment and I can’t sleep..

1 year ago

@pikilily i understand how you feel. I was diagnosed this year. It’s not easy. You need to give yourself time to come to terms with this diagnosis. But remember, life does go on. Maybe it’s just a little different to the life you imagined. You need to talk to friends and family about your worries and feelings. It’s not good to go over things in your head too much and keep it to yourself. Hope things get easier for you

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