@zabie

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zabie

Presently receiving my first Ocrevus treatment, with mixed emotions.

I received my diagnosis last summer. I have had strange months since. I know I am doing the right thing for my health right now, but I can’t help feeling sad about this unique day in my life. There was my life before and following this day, I will live in a new After.... Anyone has felt like that ?

aleks

@aleks

Hi @zabie, YES, YES, YES! But think about it like this: some things we cannot control, life is so awfully fluid and we cannot do anything about it. Take it as it comes, embrace it and accept it. It will be a new life, but we and our brains adapt to new realities, there's nothing we cannot handle, trust me :) Leave the past behind, live NOW, be curious about TOMORROW. It is the first day of your new but equally valuable life. I am sure you will rock it! And if there are any bumps on the way, no worries, we've got your back! PS. Taking into account how expensive Ocrevus is, you can treat yourself like a princess, you might have one of the most valuable bloods in the world, almost like liquid gold in your veins ;)

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zabie

@zabie

Comment deleted.

zabie

@zabie

You have pretty great advices @aleks, I know all that and thanks for making me remembering how lucky I am even though I have this condition. And yes My blood is very precious, and I feel like a Queen :-). Down there, I am really proud to take care of my health. Thanks again, Zabie

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Valerie

@Valerie

@zabie.... Bonjour! I am from Montréal and share your fears. Was diagnosed in Feb 2020 and will get my first infusion of Ocrevus in the upcoming weeks. Courage!!!!!😊

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Pam_Mehl_Enick

@Pam_Mehl_Enick

I too, was dx'd in August 2020. My first Ocrevus infusion was in September. It was quite devastating news at first, but it did explain a LOT of my signs and symptoms including problems with cognition, balance, seizures, constant body aches and pains and heat intolerance. I have to be positive and ever thankful that it is not Cancer and terminal. Remember, we don't die Of ms; We die With ms. We are FIGHTERS. We are WARRIORS. I wish you peace and inderstanding. You are not alone. Hugs 🤗

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pamsmuts

@pamsmuts

I am feeling the same way right now. I have had MS for 27 years and was on Betaseron and in remission for 15 years. I have just had a new attack in September that hit me hard and am now starting a new MS journey. I will be hopefully start my Ocrevus treatment in a month (after my next Hep vaccine) and have had the same thoughts. But keep saying that I will conquer this stage like I did my first stage. When i was first diagnosed in 1994 I was told to have my home set up for a wheelchair and I was in a wheelchair for 6 months. Then cane then I was better and was able to do anything! So I did it once and will do it again! Stay positive and stay strong!!

Jolenepicard

@Jolenepicard

I have been on Ocrevus for two years. It can’t fix the past but it has enabled me to focus on the future. I was petrified to go in for it but I have many friends in the UK that have been on it for more than ten years and now that Blue Cross has made it the first of line of defence to new patients. I Canada we are very far behind on MS but taking an infusion twice a year has been a great change.

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Jolenepicard

@Jolenepicard

Sorry *in Canada

NatC

@NatC

Hello @zabie, Hope you are doing 'relatively' well considering your recent diagnostic. I have also notice that you were from Québec, Canada. Me too ;) I have receive my two half dose of Ocrevus in January. I will be glad to exchange with you if you wish. Have a great evening

Chrissywhatidid

@Chrissywhatidid

Yes! I definitely relate to the before and after. I was diagnosed on 8/13/17, and though I don't have a great memory, I always remember that date.

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Vixen

@Vixen

Hi @zabie, I remember waiting in hospital 4 years ago to pick up my Tecfidera and I wrote a poem to mark the occasion! Another way to look at it, is that 35 years ago, there were Zero DMDs at all; treatments were largely ineffective and prospects were miserable. Your new life is still your life, and just as valuable as before. Maybe just a little bit different! keep smiling, and look after yourself x PS, I was 50 when diagnosed, so understand what a huge shock it is.....

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mblafreniere

@mblafreniere

I felt like that when I was diagnosed rather than when I started treatment. But the fact of the matter is, knowing about it or receiving treatment aren't binary, sudden markers. We would have had MS whether we knew it or not, and whether we started treatment or not. I figure that not knowing about it and not getting treatment would just have made things worse. I think it's better to know, make informed decisions and do your best to fight as much as you can. It does feel heavy, and I really sympathize. And I had the same thoughts as you did, at first. But I think you're doing a good thing for yourself.

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JazHimmy

@JazHimmy

I feel this every single time I'm getting my Tysabri infusion (been on it 6months now). Mainly because I was admitted there aswell for 2 weeks and remember sitting in the chair and being told this is where I'll be every month for treatment. It's weird and I hope it passes!! X

billyshift

@billyshift

Hey Zabie, I felt exactly like you did around my first infusion. It was like the infusion made it all real. Everything has been an improvement since then though. Well done for your bravery and we hope to hear how you go in the future. Take care!

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Embump

@Embump

Hi, I had mixed emotions too, but decided after an honest conversation with a neurologist I would go for it. I had my 5th dose at Christmas and no new lesions...taking everyday as it comes but that's all we can do. Be brave and be honest its ok to feel like this. We are human. Sending lots of Cwtches