Hello and welcome once again to Mike's MS Journey podcast. I'd love to welcome you
all, new and old listeners. It's a real privilege to be sitting talking to you all again. Today's
episode is going to be quite a bit different from what I've been doing recently. At the
start I would sit here and just talk into my phone and just get my thoughts out. That
is what I'm going to do again today. I did go to scripting a lot of my episodes, it just
made things easier for me. With this episode there's some different bits and pieces that
I want to get off my head. I'm going to be honest with you, I need to get out of my brain
and into the world. None of it is necessarily what I would class as negative, I'm going
to be honest. It's just thoughts that sometimes cross the mind that you need to put out there.
And a lot of the thoughts that I've got currently, no surprise, are regarding treatment. As I
say, as long as my chest x-ray which I've had and a blood test that I've had come back
clear, then I should hopefully be looking to start my treatment of the ocrevas. That
should be on Friday, this coming Friday that that starts. Now I've got to be honest, I've
not done any Dr Google or anything like that in terms of trying to look up the range of
things that can go on with that treatment. Don't get me wrong, my miss Niasse, she's
been brilliant. She explained it both to myself and to my dad who thankfully came with me
to that appointment. So we are aware of the sort of things that can go on. And I've got
to be honest, the closer I'm getting to the treatment, yeah I'm actually getting a little
bit scared. Yeah, no that's an understatement if I'm totally honest, it's more than a little
bit scared. I'm pooping myself, that's the best I can put it is. I'm pooping myself over
it. But at the same time, I know it might sound a bit strange, I'm actually quite excited
about it as well. Because yeah, I mean I've deteriorated a lot over the last few months.
And if there's just a small percentage chance that actually this treatment is going to help
me not deteriorate as quick as I have and give me a bit of time as I currently am, I'll
take that. Quite gratefully take that. So yeah, as I say I do totally understand there's
a lot of bad things and I don't really want to go into that too much. Because I don't
want to frighten anyone else. Because at the end of the day, let's be totally honest, they
have to tell you what could potentially go wrong. It would be wrong if they didn't tell
you that. But let's be totally fair, there is many, many thousands of people out there
on Okravas that are perfectly fine. That actually they are seeing huge benefits to themselves.
So as much as I care in my head, I do worry about stuff sometimes. And this is one of
those times. But at the same time actually I really am looking at the positives. And
for me one of the biggest positives is having a bit of time not having to deal with deterioration.
Now going into deterioration, it was only the other day actually, I was at home and
I started walking. Now I've had quite a nasty foot drop on the right foot for quite a long
time now, many, many months. I got it on the left as well. And yeah, I'll be honest with
you, it took me completely by surprise. It just, I've got to say it, it came out of nowhere.
It was so strange. I sort of went to walk and my right foot naturally was doing what
it always does. My left foot didn't want to move and my toes just wanted to scrape across
the floor. Yeah, I was a bit put out by it. I was a little bit, woah, what's going on?
Because don't get me wrong, I have occasionally got it on the left. But that's more so when
I've over-exerted myself. I've been doing stuff that realistically I probably shouldn't
be doing. Yeah, this I'd just been sat down. It didn't make a lot of sense and I have to
be honest, it went on all of that evening. I woke up the following morning, it wasn't
quite as bad, I'll be honest with you, it wasn't quite as bad, which was, I'll be honest
with you, it put a bit of a smile on my face if that's the right way to put it. It sort
of made me think, okay, yeah, this can get worse. It's going to get worse. I need help.
I really do need that help. So yeah, all the fears, all of that sort of stuff is set to
one side to an extent because actually I've got to look at the potential positives and
there really is a significant amount of potential positives. And again, do I find it a little
bit scary being sat in the hospital effectively on a drip? Yeah. I've only ever had that once
in my life. That was the Christmas before, so we didn't know anything about MS at this
point. And I was at work and I had real nasty pains on the left-hand side of my sort of
chest and sort of, I'm going to say abdomen area, and it was horrific, the pains. And
I got taken to hospital. My dad picked me up, he took me to hospital and they kept me
in for quite a few hours actually that evening. And it's the first time actually in my life
I'd ever had a drip. And they wondered if it might be something like gallstones. So
a few weeks after I had to go for an ultrasound scan and yeah, again, that came back clear.
A bit of a fatty liver, they said, but other than that, yeah, okay, not so bad. But yeah,
it was actually not long after that. It was the following February. That was just before
the Christmas. So it would have been the following February. You're going to be all looking what,
a month and a half, two months after that the doctor sat me down and said to me that
I should expect the diagnosis of MS. So yeah, I mean, that's the only time I've ever really
had that, being in a hospital on a drip. And yeah, again, from my point of view, because
this is also new, you know, maybe I am sort of over-egging it a little bit in my own brain,
which is something that's very possible. It is really possible that I'm sort of worrying
for no reason. But in my own opinion, if I wasn't worrying, I'd actually be a little
bit more concerned. If I wasn't worrying, I would be thinking to myself, have I actually
taken in all the information I've been given? Have I actually thought about that information?
Because there's been a lot to take on. An awful lot. And I'm quite appreciative to the
fact that there's been a lot of honesty attached to it all. Yeah, I mean, that's probably about
as far as I want to go into that currently. Hopefully when I next talk to you, I can explain
to you how the infusion has gone, because I will wait to record my next episode on either
Saturday or Sunday of next week, because that will be after the infusion, as long as the
blunt and the chest x-ray come back clear. Let's hope. So yeah, hopefully on the next
episode I can go, yeah, I was being really, really silly, it went absolutely fine. So
we'll see on that one. In terms of how I'm actually doing, as I've explained the other
night, I had that foot drop come on the left hand side and since then, it's been coming
and going. Yes, it's been on and off. More off than on thankfully, but it's getting me
a little bit concerned. So all I can do is just sort of take it as it comes and hope
for the best. Again, I've been getting lots of sort of stabby electric shocky type pains
just about everywhere that you can imagine, I'm going to be honest. I actually had one
of the dogs sat in the office at work and I'm tapping out an email and I got this electric
shock pain just above my left knee, funnily enough. Actually, I yelped, I genuinely yelped,
it really did hurt. And yeah, I mean, on and off, I've been getting that sort of stuff
just about all over my body. I've noticed the last, probably the last 12 hours or so,
I've actually been getting very tingly in my left hand as well. I don't know why. The
rest of the arm is perfectly fine, not a problem, but my left hand's been getting very tingly,
very itchy. And yeah, it's just been feeling a bit strange. And again, that's been on and
off. It's not been a constant thing. It's been on and off. But yeah, it's not been particularly
nice. My memory, it's not been great. I'll be honest, my memory's not been great at all.
I've been having conversations with people and literally within a couple of minutes,
I totally forget what we've been talking about. Very, very strange. I mean, I can sit texting
on my phone and put phone down and somebody could say to me, what was that conversation?
Without reading the text messages, you've got no chance of me telling you. And it's
not been all the time. It's just been now and then. But again, it's something I find
very disconcerting. I'm not a fan of it. Nobody's going to be. Believe me, I can understand
that. But yeah, I don't like it. It's something that is worrying me. I'll be honest, there's
quite a lot of things at the moment that are worrying me in terms of this. But I'm trying
to push through. I'm trying to fight through. As I say, for me personally, the thought of
getting the help from the treatment is massive. It's something that honestly, we fought really,
really hard as a family to make this treatment happen. Now, I've had the letter from EMS
nurse that explains to me what the MDT have said. I'm not going to go into massive detail,
but yeah, the doctor that was on the MDT, he wanted to put it down as primary progressive.
But if he did that, I was not going to be granted treatment because at the stage I would
have been at apparently, it wouldn't have sat on their tick box sheets where I could
have been granted the treatment. So all of the rest of the MDT went for relapse in remitting
because that meant I can have treatment. Because as the letter says, they believe I should
be given the opportunity to have treatment and see how it goes. So thankfully, that's
where they went. That means that yes, the treatment is there. It's on offer. As long
as like I say, I'm going to say it again, I've got my fingers crossed that the chest
x-ray and the blood tests come back clear and we can get started. I can get some help
with a fight I've been having because as I've said before, my family have been incredible
in this fight. They really, really have. Every single one of them. All of the kids, fantastic.
My dad, absolutely incredible. My brother, top notch. Lisa, I don't need to say anything
more. She's just unreal. You know, I've had my mum and her husband as well as my younger
brother. I'm not going to call him my little brother because he's taller than I am. You
know, all of them have been available should I need. Nan, Grandad, the list could go on.
Genuinely, the list could go on. They've all been incredible. But now it's time for
the medical help that I'm needing. And yeah, my fingers are crossed. And like I say, I'll
say it again. Yes, I'm scared. Yes, I'm nervous. But weirdly excited as well. Well, that's
where we'll leave it for today. Thank you very much for listening and I look forward
to speaking to you all again soon. Bye bye.