A little bit of good news

I had a monthly appointment with my GP yesterday. We’ve been having these get-togethers ever since I was first diagnosed and basically they allow her to monitor at close regular intervals any changes in my condition that might require medical intervention. So far there’s been little need to do much more then just chat about my experiences during the preceding month. Yesterday we discussed my latest blood test results. Since November I’ve been taking 50mg twice a day of Riluzole, the only drug in the UK approved for use with MND. As the drug can have a negative impact on liver function it is necessary to perform monthly blood tests for the first three months. After that the intervals increase, typically to every 3 months for the first year and then annually thereafter. The good news is that everything is normal and I have been given the green light to continue to use the medication. So now I don’t have to worry about having a blood test every few weeks which will give my arms a chance to heal. After all the blood tests I’ve been having in recent months the veins in my arms were starting to resemble old bicycle tyre inner tubes covered in lots of puncture repair patches! One day they’re going to stick a needle in and I’m going to go ‘bang’ and there’ll be bits of me everywhere 🙂

Riluzole is something that my Neurologist tells me I need to take on faith as it will never make me feel any better or improve muscle strength. If it’s doing its job properly then it will slow down the progression of the disease, nothing more, and even then it only typically buys you another three months. For this reason it is best prescribed in the earliest stages of the disease so as to extend the quality time available. Three months may not sound much but in cases where the disease is particularly aggressive even this can mean so much. From what I’ve read Riluzole appears to be more effective in bulbar-onset MND but as I have limb-onset MND it is probably not having such a beneficial effect. But to counteract this I’ve also read that life expectancy with limb-onset is greater then bulbar-onset so what you loose on one thing you gain on the other I suppose. It may not be helping much but at least I don’t appear to have suffered from any of the potential side effects which include nausea, vomiting, headaches, dizziness, vertigo and pain. And for that I am grateful.


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