April 29 - Update 8

Information From the GBSSG (UK) Annual Meeting - Part 1

I am attempting to summarise what I found out at the meeting, this is a laymans approach, so apologies to medical professionals and if this is already known, but I decided to start at the beginning:

In your body there is a central nervous system, that is in your spinal chord and up to your brain and a peripheral nervous system,  these run from the spinal cord along your arms and down your legs.  Above is a picture of a normal peripheral nerve.  Signals are sent up and down these pathways, when things are normal.

Below is my simplistic representation of the relevant parts of the peripheral nerve to GBS/CIDP:

The nerve is very much like a wire conducting signals within.  It can't operate without the central cable (axon) or the outer coating (Myelin sheath).  Some of these "wires" can be very long, in the worst case over 1 metre from the base of your spine to your toes, in my case and even longer if you are taller!

There appear to be three different potential issues:

The first is the Myelin sheath is attacked and damaged, hence the signals get disrupted and either take longer to get there in most cases, or fail to get there at all.  Now the Myelin can repair itself and does over time, but repeated damage can cause more severe issues and thus disrupt the signal even more.  This, in my opinion, seems to be, by far, the most common.  The nerve conduction tests are run to confirm this issue.

The second is the actual Axon is broken/snapped, generally at one end or the other, it is believed.  The problem here is that if the axon is broken at the far/bottom end it does not take long to regrow and recover, however if it is broken at the top end the time to re-grow will be considerable (for 1 metre they estimate 3 years!)

The third is when the nerve path is actually blocked.  This is where something has inserted itself in between the nerve path and actually halted the connection totally.  In order to resume the connection the blockage has to be removed completely, but he use of various drugs etc.

I will put more information up from the meeting next week (or so) about how you contract the disease in the first place, as I am still waiting confirmation on usage of certain slides.  I again apologise for potentially over-simplifying the subject, but I have tried very hard to avoid complex terms and medical jargon.

My Progress

The DWP have made a decision and awarded me some allowances, this means the car changes have been paid for (and they have back dated them by nearly six months) - I may even get a new car :-).  I have to be re-assessed in 18 months, but they got there in the end!  I just hope others do not face the struggle I have had - but have a feeling they do at least in the UK!

I spent nearly 2 hours on Wednesday having numerous breathing tests/scans etc, in a brand new device (cubicle) that measures just about everything to do with lung capacity and how you breath.  This machine has a mouthpiece like in scuba equipment and they put a clip on your nose, forcing you to breath through your mouth.  The tests were complex and I suppose thorough, what I learnt was your lung capacity is related to your height - the taller you are the greater the capacity.  My capacity is 108% of what is expected - so that is good!

The other good news is (baring some blood tests) my Sarcoidosis is in remission YES!!!!  The reason for the baring blood tests is they were supposed to be performed on Wednesday after the other tests, but the nurse was not sure how fresh the blood needed to be for the tests, so told me to come back another day - and I have been too busy to do so, trying to get back to work!  I have to go back in three months to have further tests.