Friday 18 May 2018

3 years as a Lemmie - Happy 3rd Re-Birthday to me

3 years ago today I went in for Day 1 Round 1 - I class this as my Re-Birthday as it was the start of taking back control of my life again.

So as promised here is the Previously on TLJ recap

May 2015 - Now

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 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
  • 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
  • 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 :-)
  • 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.
  • MS Disease Activity - NONE - for 3 years now I have been NEDA - No Evidence Disease Activity. This is the big one really, no new lesions, no active lesions, the old lesions are doing what they do and breaking down into nothing - that's what they do the break down disappear and leave a hole where they were and your brain shrinks back in to fill the space where the lesion was. When the brain shrinks its called brain atrophy it ends up looking like a peach stone after all the fruit is removed and with MS it happens much faster because of the number of lesions we collect - so YAY my brain is only shrivelling now at the 'normal' rate.
What I did not have then that I do have now :

  • A Hypo Thyroid - I knew from the start that 30% of us win the thyroid lottery and had always hoped to miss out on that winning ticket. It started coming in January this year and just kept coming. I'm now on a LevoThyroxin a day to 'medicate' it. Strangely a lot of they symptoms for HT are very much MS-like. 
    • Whilst I never referred to the tiredness as fatigue for MS, damn but did it punch me in the face for the Thyroid. 
    • Joint pain / muscle pain - I've been such a decrepit old bat with back and hip pain
    • Weight gain (well at least I have something to blame it on now I guess)
    • Slow movement - see joint pain
  If I'm honest whilst its a pain in the arse (not literally) given that 3 years ago today I was losing my sight, I was walking with sticks. Trying not to wet myself and all that other fun MS stuff. It's such a small price to pay.
  A little thyroid tablet and some funky new vitamins and it's all stabilised now and while I'm not dancing at this one, but I'm happy that if this is the swap for MS then so be it.
  • Onset of the menopause - Well I'm 46 now and it was always on the cards, Mum was 43 when hers started so I guess it runs in the family. I have an appointment on June 4th with the doctors about this one, but the night sweats, the headaches, the periods that just don't happen that have followed from the horrendously painful and heavy ones - it's all pointing that way. I'm okay with it, since the inside bits don't work anyway it's always seemed a little unfair that I had to go through the monthly's for the defective bits.
To this day I absolutely do not regret my choice of Lemtrada

Apologies, I'm repeating myself again, but the last 3 years have flown by so very fast. So much has happened, a lot of it awesome and amazing and some losses which have been heartbreaking and broken me into a million pieces. The love and support from Gareth, my Aunt Kathy, Gareth's Family, our friends and those that I have met online, talked to by phone, met in real life or just exchanged emails with has been incredible - I don't know what I would have done without everyone. 

EDIT - I've just realised reading that back it looks like I'm planning to stop waffling at you good readers - I'm not - I said I'd keep this going for the long term no matter what and I meant it,

I've been for my monthly bloods this morning, so that's 3 years out of 5 for my monthly stabbings done and dusted too. Results will be published early next week, you never know perhaps the thyroid will have decided to behave itself.

So roll on Monday, blood work back, a new job to get stuck into weigh in Tuesday morning to see how much weight I've shifted doing Tom Kerridge's Dopamine diet - 5 lbs last week was a good start but there's a lot more to go. 

The sun is shining, it's a beautiful day and the future is bright, I'm off out to walk the dogs at K9 in the sunshine and then BBQ'ing some lovely Wagyu Burgers for our dinner. I may even indulge in a cheeky G&T tonight as a nightcap.

Before I go, if you're looking for more awesome MS Warrior stories please take a look at Claire's story - a very funny and down to earth lady who likes a glass of wine

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