Mo’ Lesions, Mo’ Problems

I knew on the walk to the Mater Hospital today what the name of my latest blog would be. Still though the news, although unsurprising, was unpleasant to hear. “Your most recent MRI was discussed back in May and 3 additional lesions have appeared since last years MRI”. I kind of guessed when they moved the appointment forward from November to July that something was up.

Bummer. I like to think I know what I’m in for with MS but I really don’t. No one does. While the majority of my lesions are quite small, they’re on the increase and without me visibly relapsing I’m not going to know how they affect me. All I can do is try keep them at bay. Which, as per my previous blog, I haven’t been very consistent at doing. Copaxone was always going to be a temporary aid at best. Its side effects were minimal for me but that meant higher risk of relapsing or increased chance of further lesions. Unlike other medications, which I could have chosen with lower risk of relapsing but much more extreme side effects, Copaxone in no way affected the reproductive system. That was a deal-breaker for me and although it hasn’t prevented further damage with respect to the spreading number of lesions on my brain I just have to look at my son Oliver to know I 110% made the right decision.

I’ve never played chess so I don’t think I could do an accurate comparison. What I do know is that it’s a game won with the right strategy. I have to change my approach. I’ve known this for a while. It’s a shame I’m being very reactionary. I need to be more proactive. These are generally buzz words I save for the office but it’s true… it’s damn true 🙂

I sat there today, with my wife by my side, as my balance, vision & reactions were checked. Back to basics really. Questions asked of me that have been asked plenty of times before. The answers seldom differ. Still aware there is something underlying in the background yet to manifest itself. Still occasional spots in my vision, still slightly unbalanced, still infrequently dizzy, still regularly fatigued. Still feeling fine. It was recommended that I change my medication. I expected as much.

Gilenya and Tecfidera are what I have been advised to choose from. I’ve set up a Facebook page, MSers United, for those I know with MS and have asked those in the know to provide feedback on both drugs. Also my MS nurse, Jacqui, will send the info on both out to me next week. I’ll go through them in detail with Michelle, as we have done before, and will probably have to arrange a meeting with Jacqui to discuss the next steps. For those who have read my Juggernaut blog you may recall Jacqui was out on indefinite leave earlier on in the year. Randomly I bumped into her on Clonliffe Road, just around the corner from where I live, a few months back. It was a particularly sunny evening and she had taken a detour walk home from work to get some extra time in the sunshine (putting her own advice into practice) when I saw her. It was such a comfort talking to her, seeing she was ok, and knowing she was back in my corner.

I have made a fair few changes since diagnosis but I’ve known for a while the strategy has become stagnant. I don’t want to bombard myself with changes as I know I won’t stick to them. There’s a few things that I want to do and others that I need to do. I need to start practising yoga; an exercise for both body and mind, I really need to get up off my bum and just do a class. There are plenty of youtube clips too so I’ve no excuses. I’m getting repetitive but I need to be more disciplined with my diet and more consistent with regards to exercise. I paid to join a running club in work and I rarely go. The doctor also advised things like massages and rekhi are worth looking into but it’s down to personal preference. A common denominator is the intention to make you feel relaxed. Michelle got me a ukulele for Christmas which I’ve barely touched. I want, and I think need, to learn a musical instrument. The aim is to use parts of my brain that are usually left idle. Whether or not my brain will be able for that is another question. I was also asked today how my memory retention is “Long term good, short term badI wish it was the other way around. So I do wonder how competent I will be at learning something new. I need to see this as a challenge rather than a deterrent.

I think I’ve set myself enough goals for the time being. Feel free to get in touch with any advice or recommendations. The strategy will have to change regularly. After all, I’m only a pawn in the game…. we all are.

Someday, everything is gonna be diff’rent
When I paint my masterpiece

Bob Dylan

 

#KBYerrr

 

 

 

10 thoughts on “Mo’ Lesions, Mo’ Problems

  1. Great Blog. I was on Gilenya for a year and a half and my Neuro moved me to Tecfidera. The difference for me is huge. My energy levels are far higher. I’ve had no relapses. I do get some very impressive flushes ( kind of makes me look like i’m going thru menopause ). Every one is different and every one will react differently. Listen to what your Neuro suggests and then seek a second opinion if your not convinced. I tried to find your FB page – but couldnt.

    Liked by 1 person

    1. Thanks Glenn, really appreciate the feedback and have added you to the group 🙂 It’s only really started so we’ll see how it goes! I will most likely post up there if I have any more questions re Gilenya & Tecfidera. Thanks again.

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  2. Hi Keith,

    Greetings from Lebanon. It’s O3O0 hrs here (O100 hrs in Ireland). Just woke up and was browsing FB (as ye do) when I came across your post. Well written as always and with the usual positive tone.

    With our busy lives its ‘s always difficult to stick to our goals. Recent research shows that it now takes 66 days of consistence before something becomes a habit.

    How do you eat an elephant? One bite at a time!

    Warmest regards,

    Dave

    Liked by 1 person

  3. I love the name of this blog! 🙂 I do not have experience with Tecfidera, but I was on Gilenya for about 2, maybe 3 months before I pulled the plug with my neuro’s mutual approval. It did not stop my monthly exacerbations, I gained new lesions, it gave me a UTI, and I started losing hair. For me, it was a MAJOR waste of time, and it was a costly one for sure. However, everyone’s disease course is obviously different. I know people who are doing quite well on it and have nothing but good things to say about it! I wish you best of luck in whatever route you decide to travel. It’s definitely a scary thing, and it sucks. I’m sending positive vibes though. Keep us updated!

    Liked by 1 person

    1. Hi Nicole, thanks for getting in touch. I have to say I’ve heard mainly good things about gilenya but as with anything it has its good points and bad. I will certainly be thorough in my research before deciding what next to move on to.

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  4. Another inspiring and reflective blog. You put your thoughts into words so well – u are def using that part of your brain really well 😉if anyone can face this new challenge it is you. Me and your best pal Oliver are with you all the way xx

    Liked by 1 person

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