Hello and welcome to the next show. It's show number 25. I'd like to think you've all had a good week and it's nice to come and talk to you again.
Mine's been a bit of a mixed bag this week, I'm going to be honest. Aside from the usual aches, pains, all that sort of stuff, I'm going to say it's actually been a relatively productive week.
All's going to be revealed on the show today. You're going to have to bear with me, I've got quite a lot to talk about so I have actually scripted this show quite a bit.
Because for me to remember everything I'm going to say on this one, I'm just not going to be able to do it. So please bear with me.
So I'm going to be talking today about the neurology appointment I explained that I had booked in for Monday.
I'd say that was quite an interesting appointment, I've got to say. I think you might enjoy listening to this one.
Also this week I've had the phone call from my MS nurse. I've been looking forward to this phone call.
I've had physio this week. A summit that kind of happens once a month, give or take.
And also I'm going to tell you I'm going to be releasing two shows this week. I know, shock horror, two shows. All will be revealed.
So, going to start off today with the neurology appointment I had on Monday.
As I said in the last show, this appointment was booked as a bit of an urgent thing.
I've had to put in all sorts of complaints. My dad had put in a complaint to the local MP because of me being just left.
You know, it's 11 months over since I was told by my GP to expect the diagnosis of MS.
So to be left as long as I have with no treatment, unfortunately it became time to start putting in complaints.
Well, I was given that appointment to see my neurologist and I'd requested to see my MRI scans.
It was quite an education actually, this appointment. Thankfully Lisa came with me because I would have struggled with this one, remembering everything.
I'm not going to go into full details but I'm going to explain quite a bit.
So, he has explained my lumbar puncture results. They've finally come back.
And the banding that they were looking for in my spinal fluid isn't there.
Don't exist.
But what he has explained is there is elevated CSF protein in that fluid which apparently, again, is quite an indicator.
And I was confused. I'm going to be honest with you, I was really confused because I was told that they were expecting to see this banding and whatever else.
So I actually had to ask him the question. I said, so are we confirmed diagnosis of MS?
And he has categorically told me yes. Yes, diagnosis of MS is 100% confirmed.
Apparently it's quite rare to not have the banding in the spinal fluid but there are cases where that happens.
It just happens to be me that I'm one of those cases that's quite rare apparently.
There you go. That's just how things go.
But yeah, I mean, I had to ask that question. I really had to ask that question just for my own sanity.
So yeah, it's confirmed. I knew it had been since June I believe it was.
But let's be fair, you can go back to when the GP told me what to expect last February.
So I did ask him if I could see the MRI scans, which he obliged. He showed me the MRI scans.
And to be honest with you, I've seen a picture of my brain.
I know, my brain. I've literally seen a picture of the thing that makes me remember stuff and forget stuff quite regularly.
But remember stuff, the thing that actually keeps me motoring around.
It was quite an experience to see my own brain. I've actually still got a picture of it on my phone.
Lisa bless her, she took picture for me.
What I will say is on my brain, on a more serious note, there is seven confirmed lesions on my brain.
There is an eighth that is quite dim and he's sort of saying he's quite confident it is an eighth.
But for the time being, we'll sort of accept this seven and you know, at a later date we'll readdress the potential other.
I've also seen my spine scans. And yes, it was correct.
There is two lesions on my spine with a third possible.
Again, I can't work out all this sort of possibility and whatever works, but you know, whatever.
Whatever, not fussed. We know the lesions are there. That's fine.
What he has said, which he has put in a letter previously, one of the lesions on my spine, which is sort of on my lower neck area,
is showing signs of progression, which is a bit, it's more than a bit worrying, I'm going to be honest with you.
But you know, not a lot I can do about that. I just need to try and crack on.
But yeah, I mean, that's that's pretty much where we were with it.
It was a real eye opener. I'm going to be honest with you, it was a real eye opener.
And all joking aside, it's kind of brought things home a little bit to actually see.
I knew the lesions were there on my brain. I knew the lesions were there on my spine.
But the spine ones I'd seen previously, the brain ones I've never seen, actually, it sort of opened my eyes a little bit.
It made me think, do you know what? This thing is scary. I'm going to tell that completely honestly.
This thing is scary. And you know, I need to sort of find a way of accepting everything again, because it has opened my eyes massively.
But what I will say that sort of leads us on now to the phone call I've had from my MS nurse.
She gave me a call. She explained the lumbar puncture results again.
I did explain to her that I've seen the neurologist and he'd explained everything, which I'm going to say it.
It's actually hard to explain when you've got two people telling you the same thing, but then you sort of you're going over it again in your brain.
But, you know, I carry on. I sort of accept it and move on.
What I will say, and I'm going to say this quite excitedly, I've been called in for a meeting with the MS nurse.
As you're listening to this show, this will be Monday, so the 30th today, I've got to go and see my MS nurse.
We're actually talking about treatment. Unbelievable.
After all this time, I've been called in to discuss treatment.
To say I'm worried and nervous and actually really excited, it's just a mishmash.
I'm going to be honest, it's a total mishmash of feelings.
The treatment they're talking about is something, to be honest with you, I've known they've been thinking about for quite a while.
And please bear with me on this. I'm hoping I'm pronouncing it correctly.
The treatment they're talking about is ocreluzumab, also known as ocrevis.
Now, again, I've sort of kind of known where I was going with it for a while.
So I've done a bit of research. You know, I know what to expect. I know what the treatment is. I know what it does.
But again, now knowing that that's the route they're looking to go down, again, it opens my eyes.
It opens my eyes that, you know, actually this steps up a whole other level if that's what happens.
Now, I am under no illusions that the treatment is not going to fix me. It's not going to make me better.
But hopefully it can slow things down and stop the decline I'm on. And I've been on for many, many months now.
You know, I'm not daft. I do understand that it's not a cure, but it's there to help.
And honestly, I genuinely cannot wait to get started. I genuinely cannot wait to hopefully, hopefully get some sort of help just to fight.
Because I'm there fighting on a daily basis. My family's there fighting beside me.
So just having that little bit extra to try and assist. Can't wait.
Nervous, scared, terrified actually. It's probably a better word if I'm totally straight with you.
But at the same time, let's do this. Let's get this going.
Let's get to a point where actually we're pushing to a point where maybe I can just stay where I am, not slide any further.
That'd be amazing. Absolutely amazing. And again, I'm going to say it. I'm nervous. I'm concerned.
But at the same time, yeah, let's do this.
Moving on, I had a physio this week. Very, very good. I say my physiotherapist is absolutely fantastic. She really is.
She showed me some new exercises to do, which are brilliant. Not going to be easy.
I must admit, I'm probably going to need help with a couple of them.
But on the whole, yeah, no, really good session. What has been accepted and whatever now is for the time being,
that will be my last physio appointment until four weeks after my first treatment.
Just to see if the treatment is having any kind of effect on that, which again, there's no guarantees it will.
It's almost certain it won't. But we might as well hang fire and just see if we're getting any joy.
So yeah, four weeks after my first treatment, back to physio again. And I can't wait.
And I must admit, there's certain exercises I'm looking at trying myself.
And to be honest with you, what I may well look to do is show some of the exercises I'm doing on my social media accounts.
So again, if you want easy access to my social media accounts, pop over to my website at Mike's MSJourney.com.
And there is links there to all of my social media accounts.
And as I say, I will attempt to put up some of the exercises I'm doing just to show people where I am, what I'm doing,
and see if it can help anyone else. But yeah, I'm going to also be doing a second episode this week.
I don't know, a second episode. The reason for that is because I'm going to want to talk about the appointment that I've had.
With the MS nurse and fully explain where the treatment is.
And I'm hoping, I'm really hoping she's going to explain to me exactly what type of MS it is I've got.
I know what I've been told. And when I was with the neurologist the other day, he's told me genuinely what he believes.
So let's hope I actually finally get that little bit of information as well.
So once that's all done, I will put out another show. That's going to be Wednesday.
So yeah, you can hear me natter on two days this week. Apologies for that. But you know, I feel like I've got it.
Also, just very briefly, you will notice that the artwork has changed for this podcast.
And that was one of my kids. Bless them. I asked all of them if they could try and design me some new artwork.
Just to make things look a little bit more professional, make it quite eye-catching, but also quite basic.
And I think that's been very much succeeded.
Well, I hope you all have a really good few days. I will be back to talk to you Wednesday.
And I will explain more about how this appointment goes.
I hope you all have a fantastic few days and I will speak to you soon. Bye bye.