Hello and welcome back to My MS Journey.
Well today on the show I think there's only really one place to start which is talking
about my treatment.
I had my treatment, it was on Tuesday of this week.
I'm going to be honest, that's six months and I've flown by.
It really really has.
But yeah, we're back again with the treatment, starting from a second year now on Ocrevus.
In all fairness, it really has flown by.
It's got to the point where I knew I was needing the treatment, I knew it was coming up, my
body was getting to a point where to be honest it was telling me it's ready to go.
I was seeing quite a big increase in issues that I've got in terms of pains coming up.
I've had quite a bit of an increase, I'm going to be honest, quite a bit of an increase in
terms of balance.
My balance has not been very good.
It's been on and off struggling to stay on my feet at times if I'm totally honest.
So yeah, I'll be honest, I knew it was time, my body knew it was time.
So MRI scan did get completed, that got done thankfully.
I'm going to talk about that a little bit later in the show.
The blood test results came back.
Blood test results were absolutely fine except I'm apparently quite low on vitamin D. For
me that's an excuse to just go out in the sun.
So if winter wants to go away and bring on a decent summer, that's good.
I'll take that because let's be totally fair, I'm a summer person, I love the summer, I
love sunshine.
So some natural vitamin D will do me quite nicely.
But apart from that, everything was absolutely fine and we was good to go.
So again, Tuesday morning, it was a very, very early get up.
My treatment was due to start at 8.30 in the morning.
So I had to get across.
It's about a 45 minute drive, give or take.
Obviously I don't drive, so my dad took me, bless him.
We got there.
And I'm going to do a bit of a conversation about how the treatment actually went, what
happened before, what happened after, that sort of thing.
Because in all fairness, I think it's quite important to talk about that type of thing.
Because let's be fair, I knew nothing about what to expect when this all started with
myself and the treatment was initially planned in.
So I think talking about that, it could help.
It could be quite beneficial to some.
So when I got into the room, one of the biggest things that has to be done is listening to
your breathing.
So I got to sat down, my breathing got listened to.
It became quite apparent pretty quickly that there was a bit of an issue, not with my breathing,
nothing like that.
That was all perfectly fine.
Blood pressure check, come back.
That was okay.
But I've had a lump on my back since I was a kid, genuinely since I was a teenager, this
lump's been there.
And the MS nurse, obviously while she's checking the breathing, she had to have my shirt up.
So she's seen this lump on my back.
And she said she's noticed it previously, but never to the same extent.
It looked bigger.
So they called a doctor in who had to have a look because again, let's be totally honest
on a treatment like ocrevas, you've got to be careful.
You've got to be careful because there is potential side effects that are quite, I'm
going to use the word frightening, but I don't mean that to come across in the terms of scaring
anyone, because at the end of the day, there's always potential side effects, no matter what
treatment you're on.
And there is no guarantees that that's going to happen.
It's all just in case.
But the doctor came, he's checked the lump on my back.
I've got one on my stomach, a couple on my arm and whatever else.
It's just fatty tissue.
Let's be totally honest.
It's just fatty tissue.
But the doctor had to come, he had to check it.
It's better safe than sorry.
He's had a look and he said, do you know what?
He thinks it's fine.
He doesn't think it's anything serious.
So treatment could commence.
Now what they have done is referred me to dermatology to get the lump checked properly.
As I say, they do not suspect anything nefarious.
It's probably the best word I can use.
They don't expect anything like that.
It is expected that it's just fatty tissue.
The amount of time it's been on my body and it's never been an issue.
It's just a case of because it looked a bit bigger, it's got to be checked.
Sensible, sensible, not a problem.
But at done, we managed to get everything started.
You know, they put the antihistamine through me, steroid, all that sort of stuff.
And we got going on the actual treatment itself.
Now for me, pretty standard is six hours.
Start to finish about six hours, which I'll be fair, it's a long day.
It's a really, really long day.
You know, you're sitting in one room, you've got a drip in your arm, a cannula, that sort
of thing, and you can move your arm.
Let's be fair.
I mean, I'm lucky because it was in my hand.
I had movement of my arm, but I tend to try and stay as still as possible purely and simply
because what I don't want to do is I don't want to start moving around and the alarm
starts sounding because the drip's not getting through properly.
So I do.
I try and as much as I can to sit as still as possible and whatever else.
So we got going.
We got cracking and I'll be totally fair.
I am lucky when it comes to treatment because the MS team, the infusion team are brilliant.
I'll be honest, they're very, very friendly, very polite.
Have a good chat.
You know, they're just nice people.
And again, it helps that other MSers that come in for their treatment, they sit there
and we have a chat.
We have a natter and just, you know, for want of a better term, just chew the fat for a
little while, you know, just have a conversation, see how everyone's doing and try and have
a laugh when we can have a laugh and whatever else.
So again, that all happened.
It was brilliant.
I'll be totally fair.
As much as you shouldn't enjoy a day like that, it's relatively enjoyable.
Relatively.
But yeah, I mean, once, once the initial drip had gone through, we then started on the Ocralusumab
Ocrevus.
And again, I sort of have this, this bit of an issue that seems to come up where part
way through I'll have a little reaction to it.
And it is only a little reaction.
Don't get me wrong.
It's nothing major.
It is nothing major.
Anyone that's seen me on my social media or on my YouTube channel or anything like that,
will see that I don't have a lot of hair.
Personal choice.
I just, it's easier every morning.
But it also makes it easier.
I'm going to be fair.
When this treatment's going on, I tend to get a little bit of a rash on the top and
at the sides of my head.
And that happened again.
It happened again.
So they just sort of slowed the, slowed the drip down a little bit.
Didn't increase the speed.
Give my body a chance to try and, try and overcome it, which it did.
As quick as it started, it stopped.
Nothing major.
There's nothing to be frightened of with that at all.
It is just a case of your body saying, hang on, that's not supposed to be going in there.
Let's, let's try and fight back a little bit.
But yeah, it sorted itself out and managed to, managed to right itself, which was nice.
But again, with regards to, to that, it's one of those things whereby, from my point
of view, at least then I can feel it's doing something.
I'll be honest.
I actually don't mind that reaction.
I'll be honest.
I don't mind it because I can feel that it's doing what it's supposed to do.
If that makes any sense at all, it's a bit of a weird thing to say.
I believe me, I understand that, but it just makes that a little bit of sense.
But yeah, once that was done, you know, we got to the end of the, the ocaravus and then
they flush through, which again, doesn't take long at all.
Not a problem.
Not a problem at all.
All in all, I'm going to be totally fair.
The treatment itself for me, it goes quite smoothly at this point.
I've got wood in front of me.
I've got my wooden desk.
I'm touching wood just to make sure that that continues that manner.
I am not trying to tempt fate.
Wooden desk, wooden desk.
So everyone can see it's out there for the whole world.
Wooden desk.
There we go.
But anyway, yeah, I mean, it tends, tends to go quite well.
Now, when it was all said and done, and I'm going to be totally honest, for me personally,
I do find the day, it goes relatively quickly.
As I say, you've got three parts to the treatment itself.
You know, you've got part one, which is where you have your, your steroids, your antihistamine
put through you.
You have the ocaravus as part two, and then you have the flush as part three, which is
fine.
You know, perfectly fine.
It, it all makes the treatment what it is.
But it's also one of those where actually, you know, things are being done properly.
And you're aware what's going on, why it's going on and how it's going on.
And this is the whole point.
Like I say, I'm very, very lucky being as the drip was in my hand this time.
I had a bit of movement.
Like I say, I do try my best to stay still.
I want to be a good boy.
I mean, tea, coffee, biscuits.
There's all that stuff that's available to you when you sat there.
When I go for my treatment, tea, coffee, biscuits, you want them, not a problem.
Right there for you.
Not a problem at all.
Now one of the big things I will say, if you're due to start treatment, take some entertainment
with you.
Take entertainment with you that you can use to keep yourself going.
Because as I say, I am lucky.
I've got the art of conversation that I can have.
It's not always available to everyone and it is a long day.
It is very much a long day.
You know, you sat down in a chair for many hours.
Again, I can only talk ocrevus because it's the only treatment I've had and it's the only
treatment available to me.
But you sat.
You need to keep your brain ticking over a little bit.
Now I broke my laptop screen so I couldn't take my laptop with me.
But I had my phone with me and I even took a book.
And I did.
I sat, read some of my book.
It was brilliant.
I'll be totally straight.
I actually got through a lot more of it than I thought I would.
And again, it just passed the time.
It made things that little bit easier, made it a bit more simple, made me feel as though
everything was, again, for want of a better term, as it should be.
Because again, with the other people that are in the room with me, being on ocrevus,
I have to have a nurse with me at all times.
But there's other MSers in there having other treatments, not ocrevus.
So they kind of, they're in and out, which is nice because you're not sat there a whole
time talking to one person because I reckon they'd get bored with me more than anything
else.
I would.
I'd get bored with me.
But it is, it's the sort of thing that can make for an interesting day.
But again, you need to take entertainment with you, you need to take something with
you that can help pass the time.
Or sleep.
Highly recommend sleeping.
I'm not guaranteeing, but I think there might have been a couple of occasions I might have
dropped off.
Not certain, not for long, but there may have been the odd minute or two here and now.
Yeah, it's very, very possible.
But anyway, so again, that was the chair.
It is, it's the treatment day itself, if all goes well, can be, I'm going to use the word
comfortable, but it isn't always going to be in that manner.
Let's be totally fair.
But again, it's one of those that's got to be done.
Now, the other thing I do want to talk very briefly about in terms of treatment is something
that I'll be honest with you, is quite important to me personally.
And doing what I do on social media, whatever else.
Something that gets talked about quite a bit is miracle cures for MS.
There is no such thing.
It just isn't.
There is no such thing.
Now, people talk about like the HSCT treatment.
It's not a cure.
It's a treatment and it will work for some, it won't work for others.
One of my most, one of my biggest annoyances is when it said about parasite cleanses to
cure MS, talking about how MS is a parasite.
It's not.
It just isn't.
That's a lie.
If anyone tells you that, they don't know what they're talking about.
They're not this miracle doctor.
They haven't got this doctor that has cured them all of a sudden of multiple sclerosis.
No, no, no, no, no, no, no, no, no.
No, they're lying.
Or they know somebody with relapsing remitting MS and at the current time that person is
in remission.
Now, let's be totally fair.
Just because somebody's in remission does not mean they're going to have no symptoms.
It's very likely they will have, but there are people that won't.
It's the joy, the condition being so different for each and every person.
But it is very much a case of when people tell you these stories, they are lying to
you or they are just not aware of what they're talking about.
And it is quite dangerous.
I'm going to be fair.
It is quite dangerous because not enough is known about MS in the first place.
It needs to be talked about more worldwide.
Knowledge needs to be increased, which again is why I do what I do and I am not the font
of all knowledge.
Absolutely not a chance.
In fact, to say I've probably got less than a 2% knowledge of MS, even that's probably
overstretching it a bit.
I only can talk about what I deal with in terms of the condition because I'm not a medical
practitioner.
I'm not a doctor.
I'm never going to be.
I'm just a fella that has been chosen by this condition to share a life together.
Appreciate it.
Honestly, I know.
I know I really know.
I don't appreciate it.
In fact, MS can take a walk.
It's probably about the fairest way I can say it.
Let's be honest.
Anyway, back to the treatment aspect.
It is very much a case of for my point of view.
I am hoping I'm hoping the treatment can do what it needs to do and that's just slow the
progression because that is all the treatment does.
It slows the progression.
Doesn't do anything else.
It just does that one thing.
Just saying that again, it just slows progression.
Now again, I'm on ocrelizumab, ocrevas.
It's the only treatment available to me.
There is no other from what I'm told.
Is that or nothing?
But there is plenty of other treatments.
I won't talk about them.
I've got no experience of them.
I've got friends that are on them and they are fantastic at what they talk about with
regards to it.
Now I think we've done enough in terms of my treatment except there's one more part
I've got to talk about and this is quite funny.
I'm going to be honest.
This is quite funny.
Tuesday evening.
I'm at home after treatment.
The tired aspect just kind of weaned itself away just a little tiny bit.
Oh wow.
I got hyper.
We sat eating dinner and I kept beeping Lisa's nose just sort of just gently just going boop.
She's laughing.
The kids are laughing.
I just couldn't help it.
I just was so hyper.
It was unreal.
I can only imagine maybe it was the steroids.
I don't know.
But genuinely I was in the most giggly funny mood ever.
It was brilliant.
I really did enjoy it.
I'm going to be fair.
It was great.
I couldn't stop myself giggling and I'll take that.
I'll take that quite happily because let's be fair.
You go through that treatment if you can come out the end of it at the end of the day with
a smile on your face and laughing and joking.
Yeah that's good.
It's just the way forward.
For me that that's what I like.
But yeah I just wanted to put that one out there.
You know it's rude not to.
The next thing I want to talk about is the kind of things I've been dealing with in the
last couple of weeks.
And some of them have been quite difficult.
I'm going to be fair.
Some of them really have been quite difficult.
I've been getting a lot of pain when I'm doing things.
Now it doesn't matter what I'm doing.
It could be the most minimal thing in the world.
As a for instance yesterday.
I came out in the garden and as I've mentioned previously in previous shows I love gardening.
It's only really been since being diagnosed with MS that I've got into it but I love gardening.
Now I bought some bulbs a few weeks ago for some flowers I wanted to plant but they weren't
due to be planted until now.
And I went I sat on the grass and just with a little trowel and nothing major not with
a fork not with a spade nothing just with a little trowel a little hand trowel just
dug the holes to plant the bulbs in.
Now I've got to be honest fatigue recently has been kicking my bum something right and
it really really has.
And it really grabbed hold of me really grabbed hold of me and again this sort of comes back
to last couple of weeks.
I've been dealing with fatigue quite a lot on top of pains.
Now it was very much a case I probably did five minutes work.
It probably wasn't even that if I'm honest probably five minutes work and I came back
in the house and I was out like a light.
I'm going to be totally honest I mean I was completely spark out on the sofa sleeping.
I slept for hours.
I'm going to be totally fair I slept for hours.
Our Lisa and the kids didn't I don't know write stuff all over me because I would have
done I'm going to be fair I would have done.
But yeah I mean I was completely out like a light.
And again it's fatigue you know fatigue has grabbed hold of me somewhat rotten lately
and even last night I mean I did I slept like a log it was ridiculous because tiredness
doesn't quite marry up it's not tiredness.
I was completely and totally fatigued and it was only till this morning that I sort
of I still feel a bit a bit ropey now but nothing major.
But it was very much just the tiniest tiniest amount of work being done.
It exhausted me absolutely exhausted me which I'm kind of I need to find a way around it.
I do need to find a way around it and I'm wondering after being told after the blood
tests that my vit D level is low my vit D level is 23 which apparently 20 is considered
very low.
So I'm only just above that.
So I'm hoping by taking some some vit D tablets which I have gone and got although I do need
the doctors to look into that because you can only buy a certain amount over the counter
and according to the pharmacist I'm probably going to need significantly more than I'm
able to buy over the counter.
But hopefully when the vit D level creeps up a little bit hopefully my energy will also
do so because again vit D does to an extent it does determine energy levels and things.
But again that's just one of the many things I've been going through recently pains in
my legs pains in my legs have been absolutely awful I'm going to be honest with you at times.
I mean for instance coming down the stairs a little while ago I went indoors to go and
get a wire to plug my sound board into my laptop so I can record this episode and as
I'm coming down the stairs even the smallest amount of pressure on my right foot it felt
like I twisted my ankle very nearly made me fall down the stairs I'm going to be honest.
Lisa actually heard me yelp because it really did hurt quite a lot there's no ifs buts and
maybes it really was quite painful.
But again I'm having quite a few twitches in my legs as well I'll just be sat and my
legs are just shaking or twitching it's becoming quite quite regular and again I'm wondering
if that was the build up to needing the next treatment might be might be not I am making
no promises either way on that one time will tell.
But again it's that sort of thing you know I've had that stuff going on.
In terms of the hug the MS hug yeah my hug has been absolutely awful I'm going to be
totally straight I mean it feels like I've got a python around me and just squeezing
and squeezing and squeezing at the moment my MS hug is about the worst it's ever actually
been I'm going to be fair even to the point if I try and take a deep breath it doesn't
feel right it doesn't feel right it feels too restricted in and around my rib cage area.
So again I'm monitoring it I'll keep an eye on it because again I've got to see what happens
now I've had that treatment as to is it going to start sort of slowing things down a little
bit is it that I don't know I don't know again it could well be because I've to an extent
taken myself off painkillers I do take a painkiller I won't name that on here I believe I have
previously but I take it just before bed which helps me sleep when it kicks in which is nice
because again coming back round again one of the things I've been dealing with is when
I'm laying down at night in bed my legs don't want to stay still it's like they want to
go running in the middle of the night it's as if they don't remember I actually can't
go running but that's my legs and my body for you but again it's the sort of thing that
I'm dealing with currently which I'm kind of getting a little bit used to I'll be fair
I'm getting a little bit used to it's not nice I'd be honest with you I could do with
it taking a back seat for a while but that's not gonna happen we know that we know it's
not gonna happen but it would be nice again the one thing I've been this way on I'm gonna
be totally fair here the one thing I'm really waiting for is the results from my MRI scan
because actually I'm massively interested and intrigued to know what is potentially
going on is there anything new what's going on in terms of progression is there any progression
what are my current lesions looking like just something that's all I'm waiting for I just
want something to look at and say let's try not knocking into me boom arm just something
to look at and say okay this is what's going on I can understand why X Y or Z things are
going and happening I do keep hitting my wires and stuff I've got to try and figure out a
new way of sorting the wires out the boom arms great I'm gonna be honest it really does
make things so much easier but there's other bits I've got to learn anyway again from the
point of view of the things going on memory issues and I'm gonna say this the memory issues
at times are actually really really upsetting at the moment I'm forgetting stuff that is
not necessary to forget so that's another reason I want to have a look because again
the lesions on my brain is there anything going on there is a brain in there I know
that I've seen it I've literally seen the results of the MRI scan previous that proved
there's a brain I'm quite amazed I'm a little bit proud to know that exists and it's not
a little mouse running around in its in its little wheel but either way either way that's
probably enough in terms of talking about the things I've got going on there is a few
more but we can do that another week can't we we really can what I want to talk about
now is I want to talk a little bit positively I want to explain what the story is in terms
of this show and the company the the hosting site I use which is RSS.com and I'm going
to be honest with you the the opportunity has come up for me to be an affiliate for
them and I'm going to be totally honest I'm actually proud to do that for a simple reason
I am somebody with no knowledge zero knowledge at all nothing technical about me in the slightest
from moment one using RSS.com I was able to create a podcast and put it out to the world
with zero knowledge zero knowledge and for me personally I think it's helped me in terms
of my mental health I think it's helped others listening to me being able to talk the way
I do and you know I've had messages on my website and whatever else that wouldn't have
been possible if it wasn't for the fact it was so easy to use this website it has been
easy every week it's easy I've a call to show I upload a show the transcript is always bang
on and I don't do the transcript that's done by RSS.com they do it all and I don't have
an issue genuinely genuinely something I really do strongly suggest if you've got time
and you have something you want to talk about no I'm not saying it's got a BMS I'm really
not if you've got something it don't matter what it is if you've got something you want
to talk about you can create a podcast very easily and that podcast can go out on all
different hosting sites networks and whatever else you know there's a simple little thing
on this one whereby you can get it onto your your Amazons your Deezers your Spotify's your
apples all of that sort of stuff is done at the click of a button it's easy and trust
me if I can do it it's pretty easy to do because yeah honestly my technical skills are they
leave a lot to be desired and that's it's an understatement I'll be totally fair and
again I mean you can even do it set go straight on YouTube result or what it again the opportunity
is there and for me personally and again I you know I'm into my second season now I've
done 60 odd shows it just shows if you want to do this stuff there is ways of doing it
there's it can happen it can happen coming away from that again talking positive the
weather's changing it's getting a bit warmer I'm gonna be totally fair I'm sat out in my
studio now and I had to turn the heating off hours ago because the heat coming in from
the Sun outside it was warming up it was genuinely genuinely warm to stop the Sun coming in
I've actually closed my blind which is just to the right hand side of me now because of
how warm it is so again I'm gonna be getting on the gardening again now we're hoping to
have a barbecue soon which would be nice because again I love a barbecue means I've been able
to get out a bit more on my scooter which again for me is a big thing it's a positive
thing because I love going out and about I love that opportunity to be individual if
that makes sense you know if people are busy if family members are busy or whatever if
I can get out on my own that's the sort of thing that puts a smile on my face I enjoy
it you know I love doing it there's lots of things going on that I'm very very positive
about I've mentioned it previously on TikTok got the MS roundtable chat that me and a couple
of friends do it's fantastic you know what is so much fun we chat away we talk serious
but we also have fun real genuine genuine fun and it's helping people you know we get
messages afterwards where people saying to us thank you you've helped you know we've
answered questions we've given that little bit of support it's the sort of thing it's
the reason it's been created and it is well worth it it is genuinely well worth it the
gaming stuff I'm doing I'm gonna be fair it's taking a while for it to get off the ground
but I feel as though it will it will get there eventually fingers crossed so again there's
all of this stuff all of this positive stuff MS takes a lot away from us it really does
it takes a lot away from us we can take back we can take back and okay we might have to
change our life a little bit in the way we do things but we can be positive we can be
happy and we can for want of a better term stick two fingers up to the condition and
say my life not yours I'll live it my way again that's just my thoughts on it but it's
the way I like to think about it well I'm gonna call that a day for this show I'll be
honest with you I've really enjoyed sitting here recording this one if you've got any
questions in terms of the treatment aspect or whatever else again I won't talk medically
but I will talk the practical ways of things if you've got questions go to my website Mike's
MS journey.com yeah Mike's MS journey.com there is an email button there ping me over
an email and I will try and get back in touch and see if I can see if I can offer any help
or advice again we got this we can do this have a good week and I will speak to you real
soon bye bye.