Hello and welcome to my next podcast. There was no podcast last week. Unfortunately I
wasn't having the best of weeks. So to be fair I just took a bit of a break from it
and see where we went. But welcome back. It's good to be talking to you all again because
I'll be honest I did miss it not recording last week. It was a bit frustrating. But you
know one of those things we sometimes have to push things to one side to allow us the
chance to push forward as a person. For those of you joining me on YouTube I have had an
attempt at actually recording this podcast through an actual proper piece of equipment.
I'll be honest I'm running it through the laptop and I've got a green screen behind
me. I've not done that perfectly I've got to be honest with you. There's a picture of
trees and a bit of a waterfall. There's still part of the green screen poking through but
over time hopefully I will try and figure that out. There's also a little bit in the
bottom corner just telling you who I am and what this is. Well that's all for a bit of
an intro today as I say I wanted to apologise for the lack of a podcast last week. But you
know hopefully that gives you all a bit of time to recover from the sound of my voice.
I've got to be honest with you it's not been an easy time currently. It really hasn't been.
I've been struggling. There's been a few bits going on in the background. I can't go into
too much detail. It's work related but I really can't go into too much detail at the moment.
All I can really say is hopefully I'll be able to talk about it soon with you all. But
yeah I'm not going to go too much into that. It is what it is. I'm plugging along and trying
the best I can to cope with it. But yeah I mean today I'm going to do something that
I thought about doing for a few weeks but actually I hadn't done. I was a bit nervous
about it. I have in front of me my little book that I was given when I went for my first
ocrevus infusion and it's obviously the little booklet that you get given that talks about
the infusion itself, why you've been given it and everything else. So as it's MSAware
this month and we are pushing to the end of it now I thought you know what let's talk
about it. My memory isn't great. I'm going to be honest with you my memory is pretty
awful so I am going to read from the book quite a bit and then I'm going to make my
comments on certain aspects of what's in the book. So please bear with me. This is a different
type of podcast this one. It's probably a little bit more professional. Probably not
let's be honest probably not. I'm kidding myself on that one but I'm trying. I'm trying
my best. So I'm opening up the book and it's needless to say the first page is a contents
page. Okay pretty confident we know roughly what's inside this. Okay let's get in here.
Okay so it says here starting with ocrevas and basically it explains you've been given
this booklet because you've been prescribed ocrevas ocrelusumab for early primary progressive
multiple sclerosis. I don't know how early it is I'm going to be honest with you but
you know we'll take it. A bit of treatment is a bit of treatment and I have to admit
I'm feeling a bit a little bit better in myself since having the treatment. I know it's still
quite early stages I'm going to be honest it's not long since I've had the second half
bay. Even if it's just mentally it's making a bit of a difference to me which is a good
thing it's a real good thing. It's important you feel confident about taking ocrevas. If
you want to be sure you're getting the best from the treatment your doctor has prescribed
this booklet is here to help. That's pretty decent we'll take whatever help can come not
a problem with that at all. I mean there's little bits in there about sort of understanding
your MS. Let's be fair and I'm going to really really dumb it down. My immune system gets
a bit hungry sometimes and it decides it fancies eating the myelin on my nerves. I don't quite
know why it does that but you know if he's hungry he's hungry and it just chooses to
eat the wrong stuff. I kind of understand that because I love a big fat greasy burger.
As I said I'm going to try and dumb that down a little bit and it don't get much more dumbed
down than that but that's the be all and end all with MS. Immune system gets a bit hungry
and it decides it's going to eat the myelin which for those that are not sure because
I'm aware there is some people that listen that don't really know too much about MS at
all and they don't have the condition. Basically that's what MS is in a very basic form. Your
immune system attacks your central nervous system, your brain, that sort of stuff and
it just so happens that the myelin which is like the fatty sheath that goes around your
nerves that's what gets chewed up on. A little bit like taking an electrical wire and stripping
the protective coat off the cabling. It's going to mean things don't work properly
aren't it let's be honest. It really is going to mean that but that's again just a dumbed
down way of putting it. You know I'm going to make jokes because this is my way of coping
that's how we do this. So as it states here and again to me this condition is relatively
rare we do know that but around 130,000 people in the UK have MS. The next line is very very
accurate. Everyone that's got MS actually doesn't get affected in the same way. Yes
we do have very similar effects and feelings and whatever else but actually in the overall
two people are affected in the same manner. Again that's fact you know I've talked to
a lot of people worldwide and it really is a case of no two people are the same. So it
is again it's a very personal condition it's one that you can have a good conversation
with people that are also struggling with it. But it's going to be little bits and pieces
that are totally different from one person to the next. So again just one of those I
thought I'd float out there because I kind of like that comment he's put there I really
do. What have we got next? How MS affects your nerve cells? Okay nerve cells are the
body's communication system electrical messages pass along these cells to keep everything
in our bodies running. Yeah you can see here unfortunately there's a little diagram and
it shows the nerve cell it shows damaged myelin and healthy myelin next to it. And as you
can imagine the information being sent up that nerve to the cell when there's a break
in the cable so to speak actually that information is going to fly off in different places where
it doesn't need to be and that's what's going to cause different effects. And again yes
it's a really good and I am trying to play down as much as possible because again I'm
trying to sort of get these ideas out there for people that don't really know a great
deal about MS because actually I think the more that gets known about the condition worldwide
the better. So again please bear with me in this episode because this is a different thing
for me to do. MS is well known as an autoimmune condition it really is and the exact wording
that is here for that. This means your body's immune defenses mistakenly target parts of
your own body correct yeah they do as I just said immune system gets hungry nom nom nom
nom it starts to have a chomp down on the myelin around your nerves your central nervous
system that's what it does and it's a bit of a weird thought process I'm going to be
honest with you it is a bit strange I'm going to be fair. As it says here it does affect
the B and T cells I'm going to be honest with you B and T cells I'm not massively
a favor of what they are so I don't want to go too far into it but yeah now it is what
it is that's what this ocrevus then comes to have a chat with very friendly chat very
friendly. Primary progressive MS what it is saying we know there is several types of MS
that's very very well known that's something that is out there. The prescription for ocrevus
has been made to treat early primary progressive MS as I've said previously I've been looking
back and speaking to medical professionals I've actually been probably struggling along
with MS since the year 2012 so probably actually in my 11th year which is a bit strange because
again I was only diagnosed last year but maybe me I ignored a lot of signs and everything
else that was out there that could possibly have been saying to me go get your doctors
get yourself checked out for whatever don't get me wrong I did go to the doctors for little
bits and I was treated for little infections and whatever clearly that never worked but
maybe if I had pushed things a little bit tougher maybe just maybe this would have been
figured out sooner. Again as it says here symptoms can vary from person to person I've
discussed my symptoms for me again it all started with the numbness in the feet and
over time that worked its way up my body I'm not going to go massively into it but it worked
its way up my body right to the point of sort of around the rib cage area and just felt
like a massive squeeze the MS hug I do like a hug I've got to be honest I do like a hug
not this one. Possible primary progressive MS symptoms and to be honest with you not
just primary progressive these symptoms can also affect different types of MS but it's
saying eye pain and vision problems difficulty thinking clearly I must admit that's something
I'm having issues with. Fatigue oh yes numbness and tingling tingling not tickling I don't
know it does tickle a little bit though but yeah numbness as I've just described numbness
for me was where it all started. Problems with balance and coordination yes absolutely
real big issues I've got to be honest massive issues. Sensitivity to heat now this is where
it's a bit strange for me because heat yeah it sort of dulls me down a little bit but
actually I'm a massive fan I love sunshine I love the heat not a problem actually it's
cold cold weather for me this this last winter actually has been really awful yes I mean
okay this is about the point where I'm the worst I've ever been you know progressive
so I've progressed to a point where clearly I've never been but cold weather has seemed
to be more of an issue for me personally it's then talking about pain pain ah yes pain without
a doubt for me pain predominantly is legs and lower back I'm not going to class my hug
as pain because it doesn't hurt it's just it's there it's there and I'm dealing with
it so yeah in all fairness I'm not going to class that as pain but it's a real bad discomfort
and I have to admit it is awful really really awful to the point at times it makes it very
difficult for me to breathe properly I have to sort of struggle to try and to try and
breathe but I'm kind of used to it now it's been it's been going on for a long time stiff
muscles yes bowel and bladder problems now I'm not going to start talking to all about
my bowel and bladder not massive issues for me to be honest with you nothing that causes
huge problems but there is little bits and pieces and again it's not fair for me to talk
to you about that so I'm not going to the other ones talking about sexual problems again
that's not a conversation we're going to be having not here but again if you have those
kind of issues talk to your doctor talk to your MS team see if there's anything that
they can do to assist any of those sort of issues make sure you're speaking to your
your medical team discuss them the booklet is then going on to ocrevus itself now I am
mindful of the time we're sort of looking at 17 minutes here that I've been chatting
away but this little bit I actually I do want to get to talking about and what I'll do on
the next podcast there's a chance actually I might actually release another podcast in
the week there's no promise if I get chance I will release another one in the week so
bear with me it might happen as it says ocrevus is disease modifying therapy it effectively
is supposed to slow down the progression and control the MS itself now as it says here
it's talking about the B and T cells which are the ones that are supposed to protect
your body from disease but as it says when you've got MS they team up and cause inflammation
and attack your nerves which is what the ocrevus is there to do it's there to try and stop
those B and T cells from causing those kind of problems and again I'm not going to try
and get too scientific I'm not just going to completely read from the textbook in front
of me but the basics are the ocrevus goes into your body and it tries to slow down the
effect the B and T cells are causing the problems they're causing the inflammation all the rest
of it so hopefully hopefully that does actually work and hopefully things can start slowing
down for me personally because I'll be honest with you it's been flying I must admit the
problems are becoming thick and fast but actually in the last two maybe three weeks I've not
really had anything new it's been all old stuff which I'll take I can accept that now
what it is next talking about is how ocrevus is supposed to help you as a person now I
to be fair that is probably something I might well discuss in in the next episode because
we are pushing on at 20 minutes now and me sort of talking all sciencey and everything
else to you you probably get a bit much but from my point of view as I say being as it's
MS month this is sort of thing I wanted to talk about so I wanted to do this last week
but with everything I had going on I just I didn't feel right sitting down recording
a podcast when actually I wasn't in a great headspace I'm still not now there's the issues
are still very much there but it's a case of yes they're there but there's a little
bit of light at the end of the tunnel and that's all I ever asked for if there's a
possibility that we could be looking at a positive outcome on something not a problem
because I do want to look positively at stuff well I think for today we will call that a
wrap we'll call it a wrap I'm now going to attempt to start playing about and editing
this sort of stuff yeah yeah I'm not confident I'm going to be honest I'm really not confident
but I'm going to try my best and as I say those on YouTube I do apologize for the little
bits of the green screen you can still see but hopefully it's a little bit more interesting
looking at my logo which is just there and the bits of trees and waterfall that you can
actually see well I hope you all have a good week as I say if I get chance I will record
another podcast and post it in the week no promises but I'm going to try my best speak
soon bye bye