Hello everyone I hope you're all doing quite well and I will apologize now I'm
actually releasing this episode a little bit early there is a reason for that
it's quite quite a big reason I've alluded to a little bit in the last
episode where I was talking with Lisa whereby I'm a little bit frustrated with
how I feel I'm being treated or not treated as the fact may be so I wanted
to get this episode out get it done so that I can start the new year hopefully
a bit more positive I didn't want to put this episode out because this is gonna
be a bit of a downer this is gonna be me being completely honest completely
straight down the line with how I feel I'm sort of being left and as I said I
wanted to get this out so the new year start fresh you can have chirping me
back making jokes and whatever else and just explaining exactly what I've got
going on but this this one I needed to get all this stuff off my chest I'm
gonna be honest with you because since I had my lumbar puncture and I was told
I've got an eight week wait for the results to come back I'm gonna be totally
honest I've been struggling since I really have because I know I've
mentioned it a few times about how I feel like I'm really deteriorating in
recent times well you know what I'm getting to the point where I'm incredibly
frustrated with the fact that no matter what is is being done it's always a
massive long wait now under no circumstance do I think I am more
important than anyone else I am absolutely not there's no thoughts in my
head that I am but and I have to say this and I can only talk for myself I can't
talk for other people when you've got someone that's potentially got a life
changing medical condition why does it take so long to one diagnose and two to
arrange treatment that might give that person a slightly better quality of life
now give me a second I'm just gonna have a quick sip of my cup of tea and then
I'll go into a bit more detail okay right so going into a bit more detail
and you will hear I think from my voice in this episode I'm I'm not much erpy
self I'm trying to be but I'm not gonna be and I will apologize if I get a
little bit emotional during things I'm gonna say today but I've got to get them
off my chest I really have because I am adamant absolutely positive there's
people out there going through exactly what I'm going through if not they're
worse and you know what there needs to be a bit of a voice being heard by
those that are able to make changes because I'm gonna speak for myself you
know you go back to the end of February where I was told by my GP off the back
of private MRI scans that actually expect the diagnosis of multiple
sclerosis that's back end of February we're now right at the end of December
I've probably had my diagnosis maybe three months that's a long way in itself
now again I understand there's all sorts of tests and everything else that have
to be done why do they take so long why do these tests have to take so long you
suspect people of having like I say I'm gonna use the term life-changing medical
condition don't make them wait don't make them wait too long because making
people wait actually it's gonna make things worse for them now I've always
been a very positive person do you know what I'm not that positive at the moment
I'm really not I went and had this lumber puncher I was told it's gonna be
an eight-week wait for the results now speaking for myself all I can say to
that is over the last few months I have deteriorated massively I've gone from
being able to walk to work which is probably about a mile and a half give
or take to having to use a mobility scooter to get to and from work it used
to take me maybe 25 30 minutes to walk to my workplace it got to the point it
was taking me over an hour clearly there's an issue that doesn't happen for
no reason and that was me really fighting myself and to be honest with
you're struggling not to fall over it's got worse since then it's got a lot
worse since then so in that instance and where things are being made so much more
difficult why am I being made to wait so long to get a treatment that let's be
honest I fully respect the fact that the treatment itself all it can do is slow
things down get that it's not gonna turn back time that's fine I fully respect
that but what I don't respect is making me wait all of this time for that
treatment that is gonna keep me probably where I am now but yet I'm being made to
get worse before I can get to the point whereby I can then stay at a level now
yeah I do get this is coming out very negative do you know what for once I've
got to do it I've got to get this stuff out I've got to get off my chest I'm
incredibly frustrated and annoyed with the fact that the MS MDT the
multidisciplinary team made the decision for me to have to have the lumber
puncture even though the diagnosis of MS has already been made now they went
through my scans allegedly and they said from their point of view there was one
scan at one lesion on my spine and multiple on my brain right in front of
me I have got letters from my consultant my neurologist stating and I'm actually
gonna read to you what this actually states okay thank you for enclosing the
report this which shows at least two intrinsic spinal cord lesions one at the
C7T1 level and one in the lower thoracic cord that's at least at least two
spinal cord lesions why is that MS MDT only saying this one this is a letter
actually from my neurologist who has seen the scan reports I'm also going to
read another report that was given by the private MRI company who done the
scan so give me a second I've just got a paperwork in front of me that I'm gonna
read from and it states here there is intrinsic cord lesion seen at C7T1
level with some swelling of the cord next part there is another intrinsic
cord lesion seen at the lower thoracic cord so that's two people looking at
them scan saying actually there's two on my spine why does that MBT unit only say
there's one I'm sorry I am very frustrated with all of this and I don't
understand how they can come up with that finding when there is two people
looking at the scans and making it clear there's two lesions now the MS MDT unit
it seems to be a very secretive thing and I'm gonna say that it seems to be
very secretive because I actually requested to attend the hearing that
they were doing I was told no you're not allowed they go through everything and
they make their decisions now going back to my neurologist he's wording after my
MRI brain scan on the 20th of June stating I'm writing with the results of
your MRI brain scan from the 20th of June this does show a few tiny white
matter hyperintensities around the ventricles of your brain so I have two
spinal cord lesions at least and a few lesions on my brain why does that MS MDT
unit think it's okay to allow me to deteriorate without treatment purely
just across some T's and dots of my eyes as I said the other day when I was
talking with Lisa on the last podcast the system's got to change that's not
fair now again I'm gonna read something that my neurologist wrote on the 15th
of the 10th of this year and this is going off the base of my brain and
cervical spine scan so they didn't scan the thoracic where there's a lesion they
scan the brain and the cervical spine looking at the scans myself I think that
the area of high signal in the cervical spinal cord does look more pronounced
and this may account for his deteriorating symptoms I will try to
make sure that his case is discussed at the MS MDT to consider disease modifying
treatment as soon as possible that's from my neurologist so why when it went
to the MS MDT unit that they think is okay to make the decision to force me
to wait even longer I don't want much I really don't want much I just want
treatment and yeah I totally understand it's never gonna make me better I get
that that's fine I've come to terms with that well I've not come to terms with
is the fact that the system is broken I'm not the only one there is other
people out there that I can guarantee are going through the same thing that I
am and we're being made to wait why are we being made to wait just to tease
across the night's a dotted no no no that's wrong that's very very wrong now
please don't take this as me having an attack and anyone within the NHS it
isn't the NHS do a fantastic job they work incredibly hard they keep people
safe they save lives they are fantastic but the system the system is broken the
system needs readdressing and it needs readdressing soon because there are
people out there that are being left to get worse with whatever condition just
so they can tick boxes on a sheet and not actually continue doing what needs
to be done yeah that sounds harsh I get that but this is my opinion this is me
saying what I am going through I don't accept that I can't accept that there is
things that need to be done to keep people healthy safe and well now I'll be
totally straight making people wait like they do like they're way making me wait
there's a mental health aspect of that as well they're not knowing I'm gonna be
totally honest I sat there with Lisa the other night and I'm getting to the point
I literally said to her in the new year I think I should write a will I shouldn't
have to think that I genuinely shouldn't have to think that not when there is a
treatment there that can kind of slow the roll try and get me to a point where
I stay where I am for a bit because at the moment like I said previously I'm
falling off a cliff I really am and it's not nice it really isn't nice I'm having
to find different ways of walking moving or and everything else which is okay I
get that that's part of the condition I totally get that nobody wants this
condition nobody likes this condition absolutely fine but at the same time why
are people being made to wait to get the treatment that will just slow things
down and try and give a better quality of life for that that period that the
treatments gonna work I'm not a scientist I don't work for the NHS you
know I've got no I'm a first aid I think that's as good as it gets I'm a first
aid I've been for a very long time so I am in no way able to make big comments
on how things should change and whatever else but like I say making people wait
for treatments that are just gonna give them a better quality of life it's wrong
it's very very wrong and it's got to change and now I don't have the answers
on how it's gonna change I've said that and I'm just literally getting my
thoughts out there as to what I'm currently going through but you know
what I need to do that and if there's anyone else out there going through the
same my heart goes out to you it really does because this is absolutely awful
and all I can say is stay strong stay strong keep fighting because maybe one
day things will change for the better and these long waits these unnecessary
long waits will stop that that's all I can hope for and yeah fingers crossed
that's that's how it goes believe me this I've agonized over this this podcast
I've really agonized over it because like I say I will say again the NHS are
incredible they do a fantastic job but actually there's things that have got to
change there really is things that have got to change now as I say I wanted to
get this one out I wanted to get this one done starting new year I will be
back to doing my positive podcasts where I'm talking a lot better but like I say
I had to get this off my chest genuinely I hope you all have a fantastic new year
and I hope the new year brings lots of positivity to everyone I know it isn't
always going to but I hope you get whatever positivity you need thank you
all for listening and I do appreciate this has not been an easy listen for
anyone it's not been easy for me to actually sit and record this one but you
know what I've had to thank you very much have a great new year and I'll speak
to you soon bye bye