GBS Update: Friday 13th January 2012

It’s just over two months since the last update, and there have been a number of developments in that time which I wanted to let you know about.  These updates have always been multifunctional, updating a number of different groups of people about how things are progressing.  Please feel free to skip to the prayer points at the end if you’re most interested in the headlines!

In November I had an appointment with my consultant for rehab (Dr. Sumanasuriya).  This was both encouraging (not least because it gives me an excuse to visit the hospital teams who cared for me while I was a patient), but also a little disconcerting.  I showed her the tremor in my hands, and she said confidently that she did not recognise it as a GBS-related tremor.  She also said (contrary to my memory of things) that she did not remember, nor had any record of, this sort of tremor when I was an in-patient with her on the rehabilitation ward.

She felt that there may be a number of reasons for the tremor, among them a thyroid problem, the medication I’m on, or a relatively common neurological disorder called Essential Tremor (ET).

I received my blood test results from the GP yesterday which ruled out any thyroid problems, and although I already have an appointment with my neurologist consultant (Dr. Katifi) in early February for GBS, I have now been referred to him by the rehab consultant for the tremor as a separate condition.

The main reason I found this news disconcerting is that Essential Tremor is degenerative and there is no cure (although some drugs can alleviate the effects of the tremor).  Whereas I had assumed that the tremor was one of the after-effects of the GBS, which would slowly improve over time, it is possible that this is something which will actually worsen with time.

So I’m looking forward to my appointment at Neurological Outpatients on February 6th as I’d really like to find out what this is, and to be able to move towards treating it if possible, or at the very least changing my drugs to see if we can improve things.  It seems unlikely to me that it is brought on by the drugs I’m on, because as I have weaned off the anticonvulsant (which is one of the drugs used to treat ET) it has worsened, not improved.

On the more positive side, my stamina and strength have been gradually building to the point where I am about to start using a treadmill again, and there are now plans in place for me to formally return to my PGCE course.

From next week I will be at the school I attended as a pupil one day a week (voluntarily, initially), building up gradually toward officially re-joining the course, taking half a class, and then upwards to 50% of a qualified teacher’s timetable.  I’m still hoping to be qualified by the end of this academic year, which would enable me to search for a job beginning in September.

For those of you who pray, I would love you to pray along the following lines:

  • Thank God that, as my Dad said the other day, we’re talking about a tremor in the hands and not about the ability to walk! 
  • For peace of mind in the uncertainty, that I would have a sense of what God has for me in this. 
  • That we would be able to make satisfactory progress in the appointment with Dr. Katifi on Monday 6th February, that he will be able to perceive what the problem is and how to solve it. 
  • That my general strength and stamina would continue to improve throughout the year, enabling me to get back to work as soon as possible.
  • Thank God for a highly cooperative university and two local schools; that I would be able to take advantage of the arrangements on offer and progress well on the PGCE course. 

Thank you for your ongoing interest and support, it is not taken lightly and very much appreciated!

Love Luke x


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