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.

April 22 - Update 7

Just come back from the GBSSG (GBS Support Group - UK) annual meeting.  There are some really clever doctors and professors in the world!  Have learnt loads about the illnesses (primarily GBS & CIDP, plus the related ones/variants - Miller-Fisher, AMAN, MADSAM - to name a few).  I have requested a copy of some of the slides so I can put them on my next post and explain some of the great stuff I was told about - as I want to get my facts right.

Also learnt about an excellent research library, where if you want to know about certain illnesses and what works/doesn't from medical/clinical studies, they correlate all the worthwhile trials into one place and it is free (to us in the UK):

Go to:  http://www.thecochranelibrary.com/

If you want to know about GBS or CIDP research just search on those terms.  The group have been granted some money for collating the results and turning them into laymans language, that means understandable to you and me!, by the GBSSG.

I have been contacted about my survey and the medical board for the GBSSG would like to review the questions and maybe recommend some changes - which I think is great and have agreed to.  In return they may publish the web page in their forums and newsletter so we all win :-)

Now for the "fun" news - The DWP have lost my file!!!!!!  So they wanted me to fill in all the paperwork again!  I phoned them up and explained I had done it electronically in the first place, so please go and find the copy and I have sent you the main doctors report on my condition electronically as well (scanned it in) - so whilst you do not have all the 3 months worth of info you do have the relevant parts.  If you want some more please let me know and I will try and find/collate it.  They replied to me on Friday afternoon and said they think there was enough information for a decision and I would be receiving a letter next week (fingers - and everything else well and truely crossed!)

My Sarcoidosis review is now this week (Wednesday) and the steroids are still causing headaches and playing nasty games with my blood sugar levels, but feeling is continuing to return to my legs and I will get back on the Wii Fit this week and see how it goes (please don't feel too sorry for the penguin or skier - as they have had plenty of time to recuperate!)

Have you seen this great program - wordle! - copy in some text and enjoy the patterns.  I put in my original blog and look what came out:

The bigger the words, the more often they occurred, so on that basis I want time to get back for tests (NOT!)

April 15 - Update 6

Had a great holiday on Jersey!  The helpfulness of all the people was brilliant.  Thanks goes to most of the attractions for having motorised scooters/wheelchairs available, especially The Jersey War Tunnels and the Gerald Durrell Zoo (as there was no way I'd have gone round either without!).  The picture below is from the zoo:

The hotel (Samare's Coast) was also good, though their room stated a walk-in shower which it sort of was (a normal shower with quite a step up!) so a bit difficult and not quite what was expected, though it and I survived, by hanging onto the towel rail (which didn't fall off the wall).  Their indoor pool was great and I/we really made good use of it most mornings before breakfast.

I made it to Corbiere lighthouse, picture below:

It was a massive struggle and really wiped me out for the rest of that day and all the next.  Not only did I have to stop multiple times on the causeway, which thankfully was flat, the slopes at either end were a nightmare.  My son nearly had to carry me up the one at the far end and how I got back I do not know (apart from will-power and massive assistance from all my family). But...

I did it :-))) !

That really should say ..... We did it!

The steroids are still having a positive effect and I can now feel parts of my lower legs again (like when they get bitten by an insect), I am still getting headaches and not feeling to great on a day when I take them, but they are working for me.  It is now how long do I need to stay on them and what's next?

My MP got further with the DWP (Department of Work & Pensions) regarding my application for allowances to assist with care and mobility, than I did (that's the good news).  The bad/funny news, as you have to laugh, is they have mislaid (lost?) my case notes and are conducting a level three search.  This means they have had two searches and not found them and are having a third look.  What really makes me cross is all the excuses and the fact they haven't told me anything. I had to resort to my MP to get this far.  Incompetent bureaucrats or what! Now I have to wait and see what they will do next.....

Nearly 250 people have completed my survey.  I am publicising it at the UK GBS/CIDP forum next Saturday, and will publish further results around July 2012.

April 4 - Update 5

Over 200 people worldwide have filled in my GBS/CIDP Survey so far - Thanks to you all - I am hoping to get to 1,000, then I'll be really satisfied.

I have just had a letter containing a sentence from the DVLA - They have stated I am fit to drive, 8 months, 1 sentence, 0 examinations :-).  Oh well at least I have been passed fit.

The DWP are proving a even worse!  All I was after was assistance in getting my car changed so I could continue to drive (and hopefully keep my job!) and it would be nice to give my mother-in-law something for the days she comes in and looks after me.

They state they do not have enough medical information, despite doctors letters and numerous others, plus me volunteering to be examined either personally or over the phone.  So I asked to talk to a medical examiner and nearly 3 weeks later - no sign of them (as my paperwork seems to be stuck in their system), but the excuses I have been given are gems:

"There are over 3,000 people in this building!"

"We can't just go and get them!"

"You can't speak to a medical person you have to speak to a decision maker"

I have given up and written to my MP in desperation to see if they can get anywhere - but it seems to me that they are just trying to outlast me!

I have had my car replaced, as I could wait no longer, with one that is automatic and has adaptive cruise control (which means I set the speed and the car adjusts automatically according to traffic speeds).  Being a Volvo the normal setting put you so far behind the car in front, you are in the previous Post Code, so I set it to minimal, but it does mean I can rest my legs completely for long sections of driving, which makes a massive difference.

I am going on holiday next week to Jersey (Channel Island), it is a place we know well, honeymooned there 27 years ago! My aim is to walk along the causeway to the Corbiere lighthouse (and back!). This will require assistance, involve a long rest at the far end and the rest of the day to recover. If I make it, I will post a photo with my next update.

To mis-quote a famous saying:

"Don't let the illness grind you down!"