gates1989 13/01/18
Last reply 3 months ago
R2 in 9 days

Hey everyone, I hope everyone is doing as well as they can. I had R1 on Lemtrada in January 2017, and I’ve improved a lot since then, so R2 is in 9 days. I’m getting the results from my mri on the 19th. I’m hoping it shows no progression. I feel like this is what it should show. I’m nervous about R2 but not the treatment, it’s the “what ifs” that come after. What if it doesn’t work, what would I do then? I’m 28, I was diagnosed at 18, I’m still on my feet and I don’t use any walking aides, but I struggle with this illness EVERY SINGLE DAY!!! It’s infuriating that thus dodease consumes so much of my mind 😡😡

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stumbler
3 months ago

@gates1989 , let’s hope the improvements continue post-round 2. After all, you have age on your side.

Unfortunately, MS will always be with us, but I would hope that it can become a smaller part of your life, as other, happier events and distractions develop. 😉


gates1989
3 months ago

@stumbler yes you’re right! Even if we all got a pill tomorrow that cured us and we all went back to “normal” we’d never forgot the journey this brutal illness has taken us on! Thanks for responding I just needed to get it out, I feel so frustrated xx


londonlad
3 months ago

@gates1989

Cedelle, long time, no speak.

Firstly, happy new year new!

I am sorry that you are feeling like you are.

I remember that you helped me immensely when starting my Tysabri treatment, by providing some outlet of my fears and reassurance.

This condition certainly sucks.
You’ve dealt with this condition for much longer than me, and while at this moment you are rightly pissed off and frustrated, I’ve read how you are a strong and optimistic person, and a fighter.

You’ll smash this, and continue to move forward I’m sure. But in the meantime, hear to listen if you want to release the feelings or have a chat.

We’ve got your back!

Best of luck x


highflyingbird
3 months ago

hi there
its a real issue we face the “what ifs”. i finished round 1 – 5 weeks ago and i am at times in that same mode of thinking what if. i struggle with walking and balance issues along with a cocktail of other symptoms and this seems to be a shot i needed to take. look i try control my thinking because it can control me if i let it. if tomorrow you were granted the gift of no worry or fear and complete peace of mind would the MRI results matter or the what ifs matter. would you even care you had MS. its not a nice thing to have to deal with at all and i know that but i think your stronger than u think or realise. you have got this far and your still fighting it hard. no matter what happens i know you will still go on moving forward because your hear with me and the rest of us in the trenches fighting hard. you dont give up your a fighter and you need to see that. otherwise you would not be hear you would have surrendered to this illness a long time ago. so take strength in that and meet whatever comes head on as i know u will. you see “its not about how hard you get hit – its about how hard you get hit and keep moving forward” a great quote i love……….
i suffer with alot of physical problems and this treatment has shown improvements in some areas but my biggest battle is not the physical battle its the mental and emotional one. remember its your mind so dont let MS take over it…..i wish you all i have that things will work out great for you and as i always say there is a blue sky above them clouds somewhere……………………………..

stay strong my friend…………


gates1989
3 months ago

Thank you guys, I’m usually so positive but sometimes this thing just gets a hold of my mind and doesn’t let go! My leg is killing me today and it’s just a reminder that I’m not as well as I could be! So bring on R2 I guess and hope for the bloody best! stupid illness, it does piss me off @londonlad ! But I know you guys are all there to support so I’m very grateful for that!! Thank you!! Xxx

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