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1 year update on Kesimpta (living with multiple sclerosis) | charlie | YouTubeToText
YouTube Transcript: 1 year update on Kesimpta (living with multiple sclerosis)
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This video provides a one-year update on the speaker's experience with multiple sclerosis (MS) treatment using Kesimpta (Kesimpta), detailing positive personal well-being and encouraging medical results, including a clear MRI scan.
hi everyone welcome to my Channel or
welcome back to my Channel today I
wanted to do a little one-year update on
gmta for everyone who doesn't know my
name is Charlie I was diagnosed with Ms
multiple sclerosis in July July or
August I think of 2022 I started taking
CA which is a DMT to help manage it in
in August 2023 and it is now October
2024 so I've been taking it for over a
year and I wanted to do a little update
on how I'm doing how my recent MRI
result was and recent blood tests are
and yeah just a general update I did a
6mon update a few months ago but I
didn't have any I hadn't done an MRI
when I did that six-month update I
hadn't had any blood test results back
and so I felt just a bit nervous putting
it out there because I feel really good
on it I felt really good on it still
feel really good on it but I was just a
bit nervous
because I didn't know what was going on
on the inside even though I knew I felt
good I didn't know if my brain and my
the MRI scam was going to come back
positive basically so I feel so much
more confident going into this video
knowing that I have like the facts and
the figures to let everyone know how I'm
actually doing I feel really really good
I have honestly gotten on so well with
cter I don't have any reaction to it at
all I literally take it it's a monthly
injection that you take um on your leg
or back of your arm but I've been told
by a few nurses that not to do it on the
back of my arm your leg or your stomach
I used to do on my leg I now do on my
stomach I just find it easier I don't
have as much of a reaction on my stomach
and yeah I take it it takes literally
about 25 seconds and then I don't think
about it for the rest of the month and
that's exactly how I wanted it to be
when I first got diagnosed I thought
that it was going to kind of take over
my whole life and I'm just so blessed
that it hasn't and I literally think
about it yeah one day a month do my
injection and I don't have to worry
about it the rest of the month so yeah
from I think Cass takes a few months to
kind of get into your system but from
honestly like the 3mon mark and onwards
I felt so good A lot of my symptoms have
been completely alleviated and now I
really only get a symptom if my body is
stressed out so if I haven't eaten right
or I haven't hydrated properly if I've
overworked like been working out too
much or whatever but dayto day I feel
really good I feel really energized I
don't have many symptoms and yeah I just
feel really really healthy which is
great I recently ran a half marathon
which was just a huge achievement I run
if I'm not running I'm at the gym if I'm
not at the gym I'm running I go on
really long walks every day I just have
a lot of energy and I am really really
grateful for that so yeah I feel really
good on kmta I had a few months where I
was reacting to the injection so I would
inject kmta and then I would get like a
rash and it would go really hard and
that would last for like maybe five or 6
days and I would just take a carot in
and then it would clear up but now I
feel completely fine and I can just take
the injection and there's no reaction at
all so that's amazing and very very
lucky very blessed so just as a body
like I feel great on it one thing I was
worried about when I first went on cmta
was the reaction to kind of like cuts
and infections and if I would get ill
more often but honestly that's something
I really haven't noticed there was a
part of me like last year as well that
was honestly a bit concerned because I
just hadn't noticed any difference in
the way I was healing about like cut
around cuts and if I was getting more
ill more often like I wasn't and so I
was like is it actually suppressing my
immune system at all because I feel
completely fine if I like cut myself
shaving or I don't know if I get like a
cut on my finger it just heals
completely normally as it would have
done a few years back before I had any
issues got ill maybe two or three times
in the past year and every single time
it's not lasted more than a week and
I've still had energy and been able to
do things uh so maybe I've maybe I've
gotten ill a bit more than usual but
it's not been more severe than it would
have been otherwise and I think that is
down to just a healthy body as well a
healthy body fueling myself correctly uh
and then kind of just overcompensating
with like the right food and the right
nutrition because I know that my immune
system is already a bit suppressed but
on the whole I haven't noticed any
difference in terms of reacting or
healing slower or getting more sick I
don't worry about kind of going into
really busy crowds I don't worry about
going into cities or traveling on planes
or anything like that I just go about it
as any other person would okay and then
the exciting part which is the results
from my recent MRI and blood tests so I
had one MRI since starting cmtel which
was in July so it's October now and I
had the MRI in
July and yeah I actually got the results
back the day before I flew so I flew
back to England for a few weeks and I
got the results back the day before I
flew so it was a very like a
nerve-wracking time and I was just
thinking about it for weeks it just
overtook my life because I was making up
all these scenarios of what I would do
if the results came back good what I
would do if they came back a negative
and just everything else in between and
what I needed to do and I was just so
worried the whole time but I got the
results back and I actually recorded it
so I'll put that in in a second but I
got the results back from the Australian
team um on like this end of things and
they basically told me that there was no
active disease at the moment
Unfortunately they couldn't access my
previous M result that I had done in the
UK at the time of the results so they
couldn't compare it to see if I had any
new lesions or not but she told me that
she was really happy with the MRI that
there was no active disease at the
moment and regardless of whether she had
could have compared it or not this was a
baseline MRI scan we won't I guess truly
know the effects of cmta until I have my
my other one because there's nothing
really to compare it to at the moment
blood tests all came back fine I've had
quite a few blood tests since then and
they all came back completely fine the
only thing that wasn't I don't really
know much about blood test but they
showed me the results and I was like y
like that seems good like I had no idea
what to say the only test that was like
out of range was my vitamin D and it was
like way way way too high I think that's
cuz I live in Australia and also when I
went back to the UK I started
supplementing vitamin D and K2 because I
was like oh what if my body is like sad
because it doesn't have as much vitamin
D and then I had the blood test and my
vitamin D levels are so high and like
obviously I'm like not concerned about
that I was just really happy for the
rest of them like all of my like immunog
globulin whatever it's called All of
levels came back fine everything was
really good and within range so I was
really happy about that and then when I
was back in the UK as well the Australia
team and the UK team had been kind of
corresponding with the previous M result
most recent M result and they sent me a
letter in the post to tell me that there
were no new Legions on the new MRI scan
came in such like a good time when I
originally got the MRI result to tell me
there was no current like disease or
active disease I was really relieved but
then also really wanted to know if there
had been any more progression or any new
lesions and so I was like relieved but
also a bit like I still feel kind of
anxious about it because I don't know
whether this is like if it's worked or
not if your seem to has worked but it
actually came at such a nice time to get
the result that I didn't have any new
lesions because I was with my brother
and my mom and so they got to then
experience that end of things of me
being like super just elated and over
the moon that I had no new Legion on my
Mr scan which is just crazy and honestly
like genuinely a miracle because I was
just so convinced that I was going to
have at least one or some new
progression because I just felt like I'd
had I don't know maybe some symptoms
from traveling or thought that I would
definitely have some more progression
and I didn't there were no new lesions
and yeah like I'm just so over the moon
I'm so happy and I'm just
so joyful that I can share like a
positive result kmta at the moment
currently is working for me and I feel
really really good on it I think just
overall like the the one thing I felt
when I just found out there it was
working and everything was good was just
so much relief I just felt like I could
finally breathe and I remember
beforehand like over planning everything
being like what am I going to do if it
comes back negative what am I going to
do if it comes back positive how am I
going to react what am I going to how am
I going to tell everyone and I had all
these like big plans and then as soon as
I found out that it was a positive scan
that it was a good scan that everything
went well I just didn't think about it
again and I I felt almost guilty because
I was like if I had received a negative
result it would have taken over my whole
life and it would have ruined my day it
would have ruined my week I would have
been distraught and so I felt so guilty
that I had a positive result I didn't
even think about it twice I was like
okay amazing like that's that's done I
need to get that off of my mind because
it had been all I was thinking about and
so the fact that it was in a positive
result was just such a relief and I was
just over the moon to be like okay I
don't I just want to like have a few
days where I don't have to think about
my MRI scan just just like a few days
and honestly since then I've just felt
like this huge weight of my shoulders I
feel so relieved I'm just so grateful
for the drug I'm
so yeah I'm just I'm just really
really happy and so so glad and so
grateful that I get to share a positive
result anyway uh yeah so that's my
positive MRI D to update at the moment
everything is great and that's all I'm
going to worry about now I'm not going
to worry about the future or worry about
my next MRI scan right now currently
today I feel good I know that the most
recent MRI was a good one and so I'm
yeah just feeling really positive about
everything so yeah I hope you guys
enjoyed this video and gained something
from it I will insert if I haven't
already I will insert the clip of me
finding out about the positive result
here it's like a very like ugly crying
clip of me just like it's just crazy how
fast my face changes like my face just
looks like this and then when I've been
crying it just like swells up and just
goes so puffy uh so yeah I'll insert
that now the link that was sent through
from the NHS is deactivated with time so
I've just literally emailed them um to
try and get a link back again so that we
can compare the images um but from what
we can see here at Gold Coast um
everything is okay there's nothing that
suggests that there's any active disease
um what we can't see is whether or not
there's been any disease between now and
the last MRI you had with um the NHS
you're well the Imaging that we've done
here shows that there's nothing active
um we can't tell you that there's
nothing new from the last images
obviously but um what's important is
that clinically you're well um your
blood test all okay as well that you did
earlier um in June um so we're on track
um it's just a matter of um the next MRI
to see where we're up to um but as long
as you're taking your medication on time
and you're doing everything um you know
we don't have any concerns in terms of
that there should be a breakthrough
disease but um we'll just see what the
next scan shows okay that's amazing
better feel like you knew it was going
to be like that deep down I know but
it's like so nice to hear yeah obviously
like it's like not active you're going
to make me [Laughter]
[Laughter]
cry just like all I wanted to hear from
like the
beginning like every M kind like had
like they just come back and be like
like like it's just such good news I'm
so happy I like really don't want to
tell my mom bad news I was so
worried oh my gosh that's lit like all I
wanted to hear from the beginning is
cry
yay oh yeah and I've been like not yet
and I've been like eating like random
stuff as
well you eat and I had a fish bow before
go eat a slice of bread or
something just want I don't even like
bread that much I don't even love bread that
that
much no active disease at the moment nothing's
active wooho I honestly just feel so
positive talking about it and I really I
really just enjoy talking about it at
the moment and I really like being open
about it so yeah I'm going to start
uploading some more videos on here so
yeah I hope you enjoyed that and I will
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