Good morning everyone from here in Birmingham,

I just wanted to give you all a little update, as I’ve been a bit quiet recently.

I finally had my appointment with my neurologist – but, to be perfectly honest, it wasn’t the most positive meeting.

The good news is that NICE has agreed I can be reinstated on Tysabri IV, which is a step in the right direction.

However… my neurologist then said he suspects I may now be secondary progressive, and that in his view, there’s no point in putting me back on it.

As you can imagine, that was a lot to take in.

We discussed his reasoning and what’s led him to think that. As a result, I’m now waiting for a new MRI scan with contrast, focused on my spine, to assess some areas that may be showing atrophy (a sign of progression in MS). This is quite a blow — but I do respect his expertise and that he’s being thorough.

That said, I personally believe there is value in going back on Tysabri IV now while we wait for all this to play out.

Even if it only helps a little — that little could mean everything over the next six months. I didn’t push this too hard during the appointment, but after some reflection, I sent an email to both my neurologist and MS nurse, explaining how important it is to me to know I’ve tried everything.

I said:

“I completely respect my neurologist’s view, but I feel it would be the right thing to try Tysabri IV again in the interim. If it helps, fantastic — and if it doesn’t, at least I’ll know in my heart that it truly isn’t RRMS anymore.”

To my surprise (and relief), my MS nurse rang me the next day. She’d read my email over the weekend and said she agreed. That in itself felt like such a win — just being heard and having a medical professional acknowledge that it’s worth trying.

So now I wait. But I haven’t given up.

I’m still fighting — not just for myself, but for everyone else who wants to go back on Tysabri IV and is being blocked from doing so.

NHSE have been clear:

"Anyone who's experienced an adverse event or deterioration on Tyruko should have the option to switch back to Tysabri IV, through a shared decision-making process with their clinician -regardless of where they are treated."

 So why are so many hospitals still refusing to reinstate it for patients?

This shouldn’t be a battle. People with MS deserve access to the treatment that works best for them — full stop.

Thank you all for standing with me in this fight. Please keep sharing, speaking up, and supporting others going through the same.

As always, thoughts and experiences welcome.

Have a good day,

Julie Cowdrill