Hi ladies and gents hope you're all taking care of yourselves and each other.
Week 21 and I will be having my month 5 bloods being taken on Friday - Time to see that the scores on the door are for that elusive Lymphocyte count. I've spoken to lots of people who've been part of the clinical trials and all those with the 'best' response to Lemtrada have been those who's counts came back up slowly and surely - these people (according to them) are the ones who haven't needed a retreatment for many years, have seen their lesions disappear and have shown 'normal' brain atrophy levels like non MS people have as they age (not that horrid your brain quickly shrivels and looks like a dried up walnut look of a long term MS patient brain)
So my message to the lymphocytes is 'take your time boys - the longer you take to fully return the more likely you are to have forgotten your previous bad behaviour' - apart from anything beside being cautious with hygiene and germy plague monster people the lack of some T & B cells has had nothing but a positive effect on my life.
The thing about Lemtrada is just like MS the journey you have on it is slightly different for each of us. My MS was pretty newly diagnosed although it had been brewing for a few years, my symptoms advanced very quickly as a result of 6 relapses in as many months. My disability level on the scoring mechanism was 0 for 99% of the time. Then there would be left leg is unusable day's where I was on sticks or limited to a wheelchair. My Optic Neuritis was 'in and out' some days my eyes were as rubbish as they've been all my life, some it was terrible I couldn't focus on anything, what little sight I had no longer made sense.
I've spoken to people who've been diagnosed for many years, who have been mostly dependent upon wheelchair / mobility scooter, have lost sight for weeks / months in one or both eyes, severe spasticity (I really hate that word) and people who have to self catheter several times a day. Some have seen amazing improvements - life changing ones over the 2 year course of treatment, some only small improvements, some people had treatment and sailed through it and others had the treatment and were completely flattened by it for weeks or months afterwards. The most we can do is prepare for the worst and hope for the best. Pace ourselves and celebrate the victories no matter how small or large.
A lady who was in a chair mostly before treatment celebrated making a cup of coffee last week - moving round the kitchen getting milk in and out of the fridge and getting the cup back to her seat with coffee still in it. This to me is awesome and something to be celebrated.
If I'm tired today because I did 15 hours of gardening and housework over the weekend and I couldn't do anything close to that before treatment then celebrate it. 'Normal people' get tired / exhausted doing this too especially if it's not a regularly performed activity. I keep stressing this isn't MS Fatigue - it's a badge of achievement I did so much physical stuff I wore myself out just like a 'normal person' would - and it's stuff I wouldn't have been able to do before I had the treatment..
I don't know if my little regime of Oxygen Therapy, vitamins and minerals, speed of treatment after diagnosis has all combined to make my experience of Lemtrada a rather pleasant one in comparison to the journey of others. My 2nd treatment next may might be completely different but I will continue everything I've been doing and plan for the worst just in case.
It seems odd to be planning now for my next treatment but it's only 7 months away now, even though round one was only 5 months ago (and it still feels like yesterday) but the project manager in me needs to be planning, preparing and mitigating risk - so here I go again on the planning exercise.
Something that is a little concerning is this impending Flu Jab on Friday - I've never had one before - but then I've never had the Flu either. It seems a little confused as to whether it's a live virus or not. Someone I know who also has MS had their jab this week and now has what I recognise as the classic symptoms for 'coming down with something'. I'm going to do some investigating on that one, I've called the doctors and they're calling me back with more information. They think that there might be more than one type - so that's probably with a question about it being live or not and are people reporting 'coming down with something' symptoms.
Apart from that all systems are operating within normal parameters for me. Life is good and long may it stay that way :-) xxx
It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Tuesday, 13 October 2015
Week 21 and doing great
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