4 years and 1 week since treatment start
My Facebook feed for the last week has been full of updates
from treatment week and then from round 2 a year later. It really does seem
very bizarre that it was so long ago because in my head it’s seems like it was
only a short time ago. So much has happened, but by the same logic in terms of
my MS – well nothing has happened.
I’m now a 4 whole years NEDA – No Evidence Disease Activity.
It’s exactly what I hoped for when I chose to have Lemtrada I wanted to stop
the MS in its tracks and I did.
I guess it’s time for a bit of a recap really a ‘then and
now’ of how things are going, please excuse the lazy copy and paste from 4
years ago for the ‘then’ part, but as I said from the start this was my way of
keeping myself honest, and check I'm not remembering stuff with rose tinted glasses and to
present a realistic view of how things are.
[INSERTED COPY AND
had before that I now Do NOT have :
Cog-fog - Gone - The oxygen therapy
helped with this greatly my brain is now clear (well as clear as it's ever
going to get)
- Constant Foot drop Gone - If I'm really tired
this does reappear a little but a little rest and it disappears again
- Spaghetti leg Gone - This was my name for
'whole leg drop' - the extreme of foot drop that had me in a wheelchair
coming back from Milan in April 2015 - If I really overdo it and walk too
much occasionally I can feel my leg getting wobbly so I slow down and rest
- Tiredness - Mostly
The oxygen therapy helped with this, I have tried never to call this MS
Fatigue - MS has NEVER stopped me getting up and getting on with things. I
regard Fatigue as an extreme where the exhaustion stops you in your tracks
makes going on impossible to achieve not just bloody hard, so I call what
I have tiredness - My medical team smile at me in that 'yes dear' way when
I explain this so I'm probably playing it down EDIT- I
should add that I often talk about tiredness and fatigue nowadays, but
this is a result of the thyroid problems that I’ve experienced in the last
year and a bit – we all know thyroid problems are a distinct possibility
post any IV Treatment and we have had the ‘mother load’ with Lemtrada. I
had hoped to be one of the lucky ones that it passes by but sadly not. It’s
why I now have ‘Bob’ for doing more strenuous things. On the sliding scale
of things – it’s a small price to pay for the rest of this list being
- Bathroom Urgency - Gone - And oh boy it's nice
not to hear that screaming claxon in my head yelling 'Go NOW you're about
to embarrass yourself'
- Optic Neuritis - Gone - My vision has
settled down completely now. the pain in my eyes and loss of the ability
to see anything in detail (like words on a page) all returned to being
just as rubbish as it's always been my whole life. My eyes might be
dreadful, but I can drive, read and live normally the thought of losing
that was horrific to me EDIT- to
clarify, my recent eye posts are a result of an eye injury when a piece of
shrapnel that got under my contact lens and gouged my eye not Optic Neuritis /
- Lack of balance - Gone - .I posted my post
treatment physio assessment back in year 1 with the pre-treatment one as a
comparison. The lovely Marnie was staggered, it was like night and day I
could balance with my eyes open and closed, no toppling sideways and
needing railings to hang on to. Now I'm just as clumsy as I always was
before MS :-) EDIT- The thyroid / tiredness does
affect my balance to a certain degree, the more tired I am – the more I
look like I’ve been on the Gin
- Sensation loss - Gone - Before treatment the
ONLY parts of me that actually had skin sensation was my right arm and
from my boobs to the top of my head. Everything has now returned to normal
with the exception of my thumb and first 2 fingers of my left hand and the
palm bit that joins them. That bit of my hand feels permanently like a
phone is vibrating against it - this wipes out the ability to actually
feel any other sensation through the 'buzzing'. I have experimented while
on holiday with what's best described as a 'herbal remedy' and when the
buzzing stops the sensation in my left hand is perfectly normal. My old
Neuro wasn't even convinced this is MS related to be honest and might just
be from the neck injuries sustained in a car accident many many years ago.
EDIT- The hand sensation loss remains, it’s been so
long now that I suspect it will always be so. There’s also some loss in my
left arm in the last few months (see recent posts about ‘the spine guy’ –
I have a problem with my C7 vertebrae pushing a disc out of place as a
result of ‘a degenerative bone disease’ ….. I’ve got arthritis which is to
be expected my parents had the hereditary form so I wasn’t likely to
escape that – I’m on the same treatment as the dog for this and it's not MS related - LOL
All things considered, this is all going according to plan,
the thyroid problems whilst unwelcome were a known side effect and not unexpected.
- MS wise things are going to plan.
Life and stuff for the last week have been good. The ‘spine
guy’ as released me from treatment, the injection to the nerve cluster may take
many months to show any result and it’s a just wait and see scenario. I’m now
released from the Eye clinic, infection has gone completely and whilst the
scarring in my left eye has left a ‘fuzzy bit’ (think looking through a bit of
frosted bathroom glass) I can see light and shade through that bit so it’s not
as bad as originally thought to be.
I’m picking up my new ‘seeing’ glasses this Saturday so I
can get rid of these awful black framed things I’m currently wearing and
replace them with the much prettier new prescription ones.
Gareth is planning a short trip ‘oop norf’ this weekend to
go and see the last day of his friends ‘Hallilapse’ show. Given the recent
issues with Winston and his anxiety I’m going to stay home with the dogs and
just relax. This does mean that since it’s yet another bank holiday weekend
here in the UK, I can add a couple of days wrapper around the weekend and have
a 5 day break, with Gareth and I still getting a ‘weekend’ together just a
little later than normal – the caveat for this is that Gareth can get leave
approved – bit pointless me booking it if he can’t really.
Saturday night was good fun, we had company and watched the
Eurovision song contest. Not a huge ‘drink-fest’ although we did have a go at
the drinking game. I love that Iceland always sends artists who enjoy the
opportunity to shout at the rest of Europe, the yodelling Australians on windscreen
wipers were very strange and as always the UK entry was just disappointing. Madonna
is neither aging well; or gracefully and her dancers with their ‘mini-protest’
went largely unnoticed.
This week looms one more with plans afoot. Tuesday is a
night out at a new start up holiday business that a friend of ours is running -
that can only be traumatic for the savings account. Wednesday a night out with
Terry for a meal and catch up. I should probably do the work thing too - unless the Euromillions comes
up trumps (not Donald) tomorrow night. New glasses on Saturday, then the
weekend when Gareth gets home (see previous caveat).
EDIT - for those readers in Norway, rather liked your entrant, although the guy with the bald head reminded me a lot of the singer from Right Said Fred - I kept expecting him to sing 'I'm too sexy' every time the camera moved to him :-) cc
Not quite the glamourous and hectic lifestyle we’d like, but
then we also have to consider Winston and his anxiety into the equation. He’s
getting there, a little better each time but he’s got a long way to go. Amber
is better each day, still wobbly but better.
All things considered, life in the Doust world is pretty
awesome really, the sun is shining and life is good.
So here we go with the start of year 5 post Lemtrada
continuing to kick arse and take numbers.
Last Friday’s blood results for your enjoyment – As usual
there are some misbehaves and some wins. Lymphocytes are satisfactorily low,
Thyroid is still within the normal range (barely)
It’s all good, hope you’re all enjoying the wins xxx