Last reply 6 years ago
What is it REALLY like?

I have recently being diagnosed and awaiting results of a lumbar puncture to confirm,but haf is living with ms really like? All you hear dr’s saying is no 2 cases are te same?! But I wanna know what yo be prepared for..thanks for any support 🙂 x

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6 years ago

If someone tells you that THIS is what ms is like for everyone they’re lying to you. Its not an easy think to deal with, the knowledge that you have this big, invisible monster than could potentially strike at any moment, but equally he may not. there are very few definates in MS, in life.

You’re just coming to terms with the nred that you may have this…thing, you want answers, answers that no one can really give you.

The reality is unpredictable, your MS (if you have it) could be really placid and uneventful, I’ve met someone that was only on his second relapse in 10 years or you could be using a wheelchair within five, the point is, we can’t live our lives planning for the worst case scenrios all the time, that isn’t what lives are lived for, not 10, 15, 30 years in the future, they’re lived in the now.

I hope that has helped you, please get in tough if you want to talk =)

ps- you may find this video I did about MS useful for you

6 years ago


6 years ago

“Prepare for the worst and hope for the best” is one philosophy………

6 years ago

thanks gav i really appreciate your words, i have been on a rollercaoster already and am now living for today with the realisation that i cant be stuck in a ‘what if and what will’ happen. since 2008 i have had 5 relapses (well thats what they are saying now) is that alot?
i am a tough cookie, as i am dealing with type 1 diabetes, pcos, retinopathy too.

Ian, i will definately get myself onto youtube and check out those videos and stumbler, a very good philosphy..

What are everyones personal experiences with ms?

thank you. 🙂

6 years ago

I’m glad I helped =) 5 relapses in three years is maybe slightly above average I think (about 1/years is about average, if you can get an average) but, as people say about food, its not the quantity but the quality 😉

I’ve alqays had a quite balanced, philosophical perspective on my MS, which I’m sure you can see from my videos. A brief word of warning on videos about MS (and information on the whole subject in general) there’s a lot of frightening, scary, angry, stupid, stuff out there, it was the whole reason I started making videos in the first place. Theres a lot of emotion in the whole subject for a lot of people, and the emotional side of the brain is silly, reactionary and quite well, shouty.

Sorry about my silly typos btw, my fingers are being silly atm

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