Last reply 4 days ago
I’m told NO to ocrevus

Not sure how I’m feeling but found out today I don’t fit the criteria for ocrevus because no new lesions since last scan even though my PPMS symptoms are worsening. Feeling pretty rubbish. Busy mum of 3 with job and doing a masters and everything feels so uncertain. Also got refused for blue badge this week. Would be grateful for any words of wisdom/support. I am still newly diagnosed so still learning how to deal with my MS.

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stumbler
4 days ago

@cathie16 , I’m so sorry that you’ve had the Ocrevus knockback, following so soon after the Blue Badge knockback.

We have to live with uncertainty, but, to be honest, everybody lives with uncertainty. We just have the advantage that we have to take a bit more care as a matter of course.

You’re presently “pushing the envelope”, being a working Mother of three and doing a Masters Degree. You sound like a very driven lady, managing all of that and I wish you well with your Masters. However, you seem to be holding the door open and inviting stress to come in. And, stress can be a major antagonist of MS.

You have to carry on down (or is it up) this path as this is what you have worked for. You just have to be careful to manage any stress as best you can.

Take care.


vixen
4 days ago

Hello @cathie16, welcome to Shift! I have to say, I don’t quite understand the criteria. My sister has PPMS and she is currently undergoing tests too. Ocrevus has been a real breakthrough, and most likely the first of many. Keep switched on to all the current research being done. Also, do you think it might be worth getting another opinion?

What sort of job do you do? Sounds like you have a busy life and don’t make things easy for yourself! Being newly diagnosed is total pants. You need to be really kind to yourself, and don’t push yourself too hard. Never feel guilty about resting as much as possible. You don’t have to prove anything to anyone. Getting used to this diagnosis really does take a while. You will go through lots of emotions, and it’s important to feel them.

There is lots of support for you on here. You aren’t on your own, there are lots of people here that will really understand what you’re going through at the moment. Stay well, eat and sleep well, slow down and don’t get stressed, cos stress is our enemy x


cathie16
4 days ago

@stumbler, thank you for your words of wisdom. Frustrating times but reassuring to know I’m not alone.


cathie16
4 days ago

@vixen thank you. You are so right about the emotions, I’m so up and down. Now is a good time to be developing my MS networks x

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