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.
- 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
- 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.
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