Monday, 20 May 2019

Year 5 - here we go again, a review of changes and month 49 blood results


4 years and 1 week since treatment start
WOW

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 PASTE]

What I 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 up
  • Tiredness  - Mostly Gone - 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 gone.
  • 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 / MS related
  • 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.

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
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).

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

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