GBS Update: Thursday 13th January

It’s been about 6 weeks since the last full update, and there are a number of things which I would like to let you know about, if and when you pray for me.

I have had appointments with two different consultants, and have another with a third consultant tomorrow.

The first was with the neurologist who has been overseeing my care since I was moved to Southampton in April. My perception of his approach has been that he seems to take a pessimistic stance, however at my appointment in December, he smiled (for the first time that I had seen!) and said that he felt my progress has been fantastic so far, and that it could be a realistic goal to be running by June. Needless to say, I was extremely pleased with his reaction!

One thing the neurologist wanted was to be able to measure my progress, so he arranged for me to see another consultant for an EMG test. I had already had one of these in April and another in June. They basically attach pads/insert needles into your arms and legs, send electric shocks down your limbs and measure how much current is passing through the nerves. So I had my third EMG on Tuesday.

The results apparently showed that my arms “could be passed off as normal”, which is brilliant news. There was noticeable improvement in my legs, however in my feet they found that, as well as the linings of the nerves being stripped away, the axons themselves have been damaged. I know from previously that the axons regrow at a rate of 1mm per day/1inch per month.

This news reflected what I can physically do: whilst I can do 99% of the things I need to with my arms, hands and legs, my feet are still floppy, and my big toes are still completely dead (the other toes I can wiggle a little bit). Whilst this might seem a little disappointing, the doctors I saw on Tuesday were keen to point out that because I am relatively young, the body will continue to attempt to repair all this damage for years to come, whereas in an older person the body may truncate the repair process at an earlier time.

His parting comment was to say that, although it is likely that I will regain full function, the readings on any future EMG test may never go back to normal. What this means in practical terms is that the tremor I have in my hands may never fully go away.

My feeling about all this is one of gratefulness to have come so far in so relatively short a space of time. However, I have believed from the beginning that I would get COMPLETELY back to normal. So perhaps you would pray for me along those lines? It is really valuable to have the information from the doctors, and that information can fuel our prayers, specifically that:

  • The axons in my feet would regrow, where there has been damage.
  • The nerve coatings (Myelin Sheaths) would continue to be repaired all over my body, specifically in my limbs.
  • I would find the appropriate level of exercise and activity (such as school visits); enough to stimulate the muscles and the mind as they regain activity, but not so much that I get exhausted.
  • My family, particularly my parents, would have the right opportunities to get back to their lives at the appropriate time. This has been a massive upheaval for them, I would like to see them blessed as they have blessed me over the past year.
  • For strength, encouragement and patience for myself over this time; that I would know God with me and a sense of purpose from Him as I take the next steps He’s put in front of me.

Thank you so much for still praying with us almost 10 months into this situation, I so appreciate every prayer. God is able to do what we aren’t, and the work that is left to be done in my body is certainly no greater than what He has already achieved.

Much love,

Luke x


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