July 1 - Update 12

Back to stuff about me for a bit.....

My physio's have just signed me off their list! Whether that means they have given up on me :-) or they can do no more.....  Seriously I would like to thank them for their positive attitude/persistence and helpfulness over the past 10 months (Maria & Pam).

The tests they have on their sheet are now fairly easy for me, I can even stand on 1 leg for over 15  seconds (and have managed 30 seconds on both legs at home).  The best one is trying to do heal to toe, walking backwards with your eyes closed.  Apparently it removes a lot of the automatic responses from walking as you have never tried to do it before, so your brain/muscles have to work it out manually.  All I know is that it is impossible!  What makes me feel considerably better is having mentioned this to my colleagues at work none of them could do it either - though they were significantly better than me.

I have come on considerably over that period and can do so much more now.  I even go around the house/work without a stick (and am fine on flat surfaces elsewhere).  I went up to London for work with a colleague for the first time in well over a year, on the train.  This was to see how I coped with the London underground, the answer was just!  It was out of rush hour, so quiet and I found the escalators OK, but the stairs were really difficult.  I was glad it was only 200 yards from the station to where we were going, that was me absolutely knackered. After the trip back home, I was totally exhausted, really pleased I had managed it but glad I had tried it with someone with me.

It seems I am confined to the Wii-Fit and the exercise bike (in my lounge) for a while longer, both have been invaluable and I would seriously recommend the Wii-Fit to all people trying to recover from GBS/CIDP as the are a great range of exercises at different levels that help with balance (being able to stand up is a pre-requisite)!  My aim is to do the simple step exercise and get more than 300 points (currently got to 200 - whilst holding onto said exercise bike - I knew it came in useful for something) - not holding on and be able to get the skier down in 27 seconds as he at least finds/sees the gates now!

I can now survive for 8 minutes on the exercise bike (only on an easy setting though) - my aim is to get to 10 minutes by the end of the summer - and still get off under my own steam.  The problem with the bike for me is the lack of scenery as I used to like being outdoors, so I have a bike in the garage that I wheeled out to see if I could get on it and field miserably :-( I can't balance. So maybe next year......

I am still on Predisolone (20mg) every other day, plus Gliclazide (for my diabetes) Alendronic Acid and Vitamin D. They do still give me headaches, but nowhere near as bad as before.  I feel so lucky that I am still improving and getting back towards "normal" whatever that may end up being. Especially as I see on Facebook etc. that other people suffer for years and years, with no/minimal improvement.

"Keep banging the rocks together!"

June 9 - Update 11

Further developments on the clinical understanding of GBS & CIDP (and how to stop it occurring).....

Once again I have simplified the information gathered to try and make it easily understood, with apologies to any medical people if I have over simplified parts, but if I put the text in verbatim, then no-one would even read my blog!  I have taken my material from multiple sources (wikipedia, journals,web pages) - I can't reference all sources (as this would also make my blog unfit for purpose of passing the base information on).

I have recently found an article on potential methods of stopping auto-immune diseases and their symptoms.  In order to understand the research further medical terminology needs to be explained (and this is the cut down version):

T-Cells can be sub-divided into different categories, one being Treg - Which are regulatory cells that shut down the immune responses after they have destroyed invading cells (thus causing auto-immune diseases). Normally these cells exist with a ratio of less than 1 to 10 (<1:10) to other T-Cells, the proposed solution increases this ratio to over 1 to 1 (>1:1).  One component in the Treg (IL-5 or IL-5r"alpha") seems to promote activation of relevant antigens (IL-4, CD4, CD25, FOXP3 specific Treg) and these cells would control auto-immune inflammation, by stopping the cells going beyond their initial activities of destroying the invading cells.

Interleukin-5 (IL-5) promotes induction of antigen specific

CD4+CD25+T regulatory cells that suppress autoimmunity

Studies, so far, have been performed in a laboratory in New South Wales - Australia.  The figures below have been copied directly from their research papers (the explanations are in English!):

Note: All animals were given a strain similar to GBS.
        White = no other drug, Grey = Sham/placebo drug, Black = IL-5

Figures A, shows the reduced clinical effect on the rats given IL-5 (first graph) and the reduced effect of weight loss (second graph).  The drugs were administered at 5,000 units/day for 10 days from the onset of GBS (usually day 12) and had an effect within 2 days.

Figure B, shows the difference in the thickness/disruption of the myelin sheaths/demyelination between a control sample and those treated with IL-5 using an electromicrograph.  The differences at day 14 & 21 are significant!

Figure C, shows the reduction in percentage demyelination over 14 & 21 days seen in Figure B.

Figure D, shows the use of an IL-5 blocker (Day 13) on the Grey Triangles sample in the figure, that halted the effects of IL-5 and brought the effects back up to the level of who had not had IL-5 administered.

Further tests were performed to see if the improvements seen in rats can be translated to humans.  The initial trials on our blood samples seem positive.  Clinical trials are hoped to be started in the next couple of years.

This is a completely different way of stopping the disease, by increasing the number of "good cells" that would prohibit the attack rather than directly going against the cells causing the issue.

This treatment could also impact other diseases such as MS. To me the results look very promising.

May 26 - Update 10

STOP PRESS: I now have over 300 completed responses to my survey - Thank You to one and all.  I will be producing more results in July/August, they will be in a separate blog.

.......Following on from the previous

There are different cells in your body for different purposes for the immune system, two main ones seem to be relevant:

• B-Cells - they are the military intelligence, that finds issues/invading antigen
• T-Cells - these are the soldiers that actually destroy the target, also known as killer cells

Vaccinations - Do they have a part to play in this?

The simple answer is Yes and No! (Hang on I'm starting to sound like a doctor?)

OK - There have been a number of studies into viruses, the vaccinations and their affects for increasing the risk of certain diseases (including GBS).  What is a vaccine?

A vaccine is a biological preparation that improves immunity to a particular disease. A vaccine typically contains an agent that resembles a disease-causing microorganism, and is often made from weakened or killed forms of the microbe, its toxins or one of its surface proteins. The agent stimulates the body's immune system to recognize the agent as foreign, destroy it, and "remember" it, so that the immune system can more easily recognize and destroy any of these microorganisms that it later encounters. - Thanks Wikipedia

Thus it is possible to assume that as this is actually a virus/bacteria that is being deliberately introduced into your system and causes the cells above to recognise the danger and so re-act/remember, it could be responsible for causing GBS?

Well Yes and No! (see above)

In 1976 there was a vaccine developed for a swine flu like virus (in the US), that appeared to increase the risk of GBS and this vaccine was terminated.  They did prove that people who were given the vaccine did have an increased risk (roughly two to five times - depending on who's research you read).  Studies from 2000 onwards indicate there is no/minimal links between vaccinations and the rate of infection per se.  In fact the H1N1 incidence in 2009 actually happened part way through a study in Paris into GBS and causes and they found no increased risk due to taking the vaccination.  On top of this, there was a study of 50 million vaccinated people in 5 European countries in 2009 that found 104 cases of GBS, thus the researches could find no link.

So based on these fact the actual normal rate across these 5 European countries is 2.08 per million - significantly different to what was stated in my last post?

As it is the introduction of foreign bodies into your system, then (like in my case - as I had inoculations in January and 2 weeks later had flu like symptoms) there is bound to be some chance, but....... (BTW for my wife's 50th birthday we are going on a cruise to the eastern Med - as long as I am fit enough - one burning question is "Should I have the vaccinations????").  So I have a seriously vested interest in saying "YES!" they do play a part, but I can't find proof that satisfies me!

Anyway.....

Your immune system knows about internal and external cells, but in order to attack your internal ones, it must get very confused? Again there are theories and this does happen in a number of other diseases.

The one thing I do not understand is "Why me?".  What I mean is if there are 1 in 10,000 of me getting this condition from a virus/bacteria/vaccine then why was I the one?  There must be something different in me that triggered this that the other 9,999 don't have.  This is also what the doctors/professionals don't know, unfortunately.  There is research going on and I will try and comprehend where they have got to, but I am still digging.

May 12 - Update 9

GBSSG (UK) Notes - Part 2

This is starting to get complicated (for the ordinary person)!  I have been researching the findings from the meeting and am trying to understand/correlate all the information.  In my travels, on the web, I have come across some wonderful medical terms, one wins (so far):

monosialotetrahexosylganglioside

This is commonly known as GM1 (may as well be called "Bob" for all I cared!).  The relevance is that people with GBS have higher levels of anti-GM1 antibodies and this can interfere with motor neuron function, other antibodies can be relevant depending on the specific strain/type of GBS (e.g. GD3, GD1a, GQ1b - Miller-Fisher).

Please note I am using the term GBS to encompass all the different types (CIDP, AMAN...)

There are a number of interesting "facts" that have come out of my research (not just from the support meeting):

1) Now Polio has largely been eradicated; GBS is the most common neurological disease in the world (Do strokes count?)
2) About 1,500 cases of GBS occur in the UK each year
3) The worldwide rate is approx 1.3 per 100,000 people annually
4) The likelihood of women getting GBS decreases during pregnancy, but increases in the few months afterwards
5) Around 20% of patents have residual neural issues
6) Approximately 5-10% of people die, usually from respiratory complications
7) The amount of research into the "big 5" diseases is astronomical compared with GBS (no surprises there!)

How do you get GBS?

There appear to be a number of different ways of contracting GBS:

A) From bacteria in foods, the most likely source appears to be Campylobacter Jenjuni - which sort of gives you food poisoning.  Then 1 to 3 weeks later a small number of patients get GBS (between 1:1,000 to 1:10,000 roughly)

B) Flu like viruses (e.g. A/H1N1) or general influenza - again you get the virus and a few weeks later you can contract GBS (in similar ratio to above)

C) Epstien-Barr Virus (EBV - the Barr has no relation to Barre in GBS!) a member of the herpesvirus family signs are sore throats and swollen lymph glands (ditto for ratio's)

It is also possible to get GBS from HIV and other infections of this type.

According to the research I have found the numbers stack up roughly 40% from Campylobacter, 20% from Influenza like illnesses, 10% from EBV.  Again I am not a medical "expert" and all these findings are taken from journals and papers/web pages I have visited and taken information from.  You could state they are inacurate, but are my best guess on what I have found.

What seems to be similar is what happens to cause GBS, but first I had to understand the immune system, so here goes:

The body creates antibodies to attack the antigens (antibody generators) in an invading cell, these are like a lock and a key see below:

When an infection is found millions are produced (as opposed to the few "sentries" wondering around in normal times), these then attack the invading cells and neutralise it's effects.  After a time the immune system stops producing these and things return to normal.

So in order to combat the illnesses listed above, the immune system creates antibodies that match the patterns and they then attack the bacteria and wipe it out, now it appears that sometimes these bacteria can be very similar in pattern to antigens of the nervous system, so the immune systems keeps sending out antibodies to attack these as well, so the sheath and axon etc are damaged/destroyed.

Interesting fact: antibodies belong to the family of large molecules called immunoglobulins - hence the IVIG!

I am now going for a long lie down, to allow my brain to recover from this terminology overload, once again I apologise to any medical personnel who think I may have over-simplified things, but I am trying to get this down to a easily understood level and the medical journals etc use far too many long words for "normal" people. 

More later..... 

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!"

March 25 - Update 4

I have noticed that the Wii fit exercises I can do require basic left and right shifts of weight (as with the Penguin - 119 and the Footballer - 320), however the skier requires small adjustments, that I just can't make - so it is not his fault after all!

My feet and toes are starting to get severe pains. especially at night, but I am not wearing socks in bed for the first time, so I don't know if that has anything to do with it?  However I had an itch on the top of my left foot (near my big toe) and didn't know whether to mutter about the itch or be really happy that I could feel something down there for the first time in nearly a year!

Just as I seem to be progressing with the exercises/feeling and improving, my right knee (the dodgy one from the RTA) has cried enough and is now very painful and won't bend past about 45 degrees without complaining - have I done too much?  All I know is that I am no longer exercising since Thursday and waiting to see the physio on Monday to get their prognosis.  I am wondering why now and how comes I seem to take 2 steps forward and then one or three backwards every time?

I have reduced the steroid dosage, to 30mg every other day, as a number of articles seem to indicate the less time you stay on steroids and the lower the dosage the better.  I hope my consultant doesn't mind, but I wasn't going to wait until mid-May to ask and I don't like the £100+ fee every time I see/talk to him!

Still waiting for the Sarcoidosis consultant; have found out his name and will ring his administrator on Monday to see what is going on, but that will be another £100+ just to see him.  I have to get this all approved by my medical insurance.

Thanks for the survey responses -Now over 180, please keep them coming.  I am going to attend the UK annual GBS/CIDP conference in Bournemouth on the 21st April (as long as I am well enough). I have produced a t-shirt to advertise my survey, I hope I don't get ejected by the stewards at the event :-) !  

If anyone else is going, who reads my blog, I hope to see you there.  You won't be able to miss me (see the front design of my t-shirt below):

March 17 - Update 3

I have just had over 100 completed surveys (in 4 days) - A massive thank you to all who have responded (This is not the end of the survey - it will run until at least March 2013, so if you haven't filled it in please do).

The initial findings can be found:  gbs-cidpsurvey.blogspot.co.uk
or @ http://gbs-cidpsurvey.blogspot.co.uk

Please go and have a look (comments welcome). If you like the results and want to assist in this global survey (and haven't already). please go to:

@ http://gbs-cidp.questionpro.com -->  GBS-CIDP Survey

March 13 - Update 2

I have just published my independent survey into GBS/CIDP.

It can be found @ http://gbs-cidp.questionpro.com or via --> GBS-CIDP Survey

Please fill it in, I want this to be a global response and hopefully find out some interesting trends.  In 11 hours 16 people already have (just click on the link above, it only takes 10 minutes)!

I will publish the results either via this blog directly or via a web link.  The more people that fill it in the sooner I will publish results, but the longest will be 3 months (keep an eye on this blog for updates).

Have just seen consultant who is pleased at the improvement on Steroids, still keep me on 40mg dose every other day. Diabetes is still all over the place, but not as high as when on 60mg - still high the evening of steroids and low the next morning.  Can walk without looking at my feet on flatter surfaces, which is helping.  Think I am about 60% of my old fitness, which is great!

The Penguin on Wii Fit is eating lots of fish (114!) and the Footballer has a headache from heading the ball (and shoes/pandas).  The downhill skier is terrible - I am surprised he hasn't been substituted/replaced :-)

I am now on Vitamin D as well as the rest so that is 5 different pill types, 3 to combat the steroid side-effects and to help with bones!  I am supposed to see a consultant about my Sarcoidosis, waiting for appointment to come through.  Neurologist wants to see me again in 2 months.

05 March - Update 1

I wish the consultants would tell you the whole story about treatments and options, when they give you the choices.  I have done a lot of research over the weekend and found it appears that a significant majority of people with CIDP end up staying on the treatment (IVIG or Steroids) for life, yet the GBS sufferer's seem to be able to either not require any major treatments or get better after one hit.  Now I know this is a subjective comment from where I stand at the moment, but it makes me glad in one way I chose steroids over IVIG (as that would require 4 weekly visits to the hospital), but not in others as I have to be on them for ever and they mess up my diabetes!

Here is a very interesting slide I found on a US GBS/CIDP website (I hope they don't mind me copying it?), depicting the time spans of GBS vs CIDP:

This clearly shows what the difference is in severity over time lapse and how, at the start of all this, my consultant was trying to get me into the GBS category.  BTW:I do not like the look of the red line!

I am just starting to try and exercise in the Wii (Wii Fit) - currently there are only a few exercises I can actually do, but the balance ones are interesting as at least now I can feel the changes so can see how I go.  Anything that involves standing on one leg is definitely out!!

The Enlightenment! (well partial)

CIDP – Drew’s Story (so far)

Introduction

CIDP is Chronic Inflammatory Demyelinating Polyneuropathy, or for the longer version: Chronic Inflammatory Demyelinating Polyradiculoneuropathy (because it involves the nerve roots).  The acute (shorter term) version is GBS - Guillain-Barré syndrome, which apparently is much more common.  CIDP does seem to have other names as well, but I am trying to keep it simple (apart from the spelling)!  CIDP can manifest itself in weeks/months and take months/years to recover from (if ever).  There appears to be numerous effects of CIDP and yet so little appears to be known about how you get it and (from a catchee’s viewpoint) how you recover from it.  Certainly books on CIDP/GBS exist, but they vary enormously in their examples and provided facts.  This is my story, based on my experiences, my interpretation of events, voices my opinion on CIDP and how I am coping/coped with it.

One bone of contention is the medical professions obsession with pigeon-holing cases/patients and attempting to make the symptoms fit what they know!  (e.g. GBS short term max. 4 weeks, therefore try and ensure the symptoms lasted no longer so it fits, when in this case they blatantly did not).  Also as my symptoms were only confined to the legs, this again did not fit their pattern for known cases, so again it could not be CIDP.

Why am I writing this? Because the mystery/uncertainty shrouding this condition makes it difficult/impossible to understand and the medical descriptions scared me, much more than they helped. I read someone else’s account and it contained more useful information (in a readable form) than any other document, so as my experience has been significantly different to theirs; I decided to add to the knowledge, in the hope that someone else reading this in the future would gain a small insight into their condition and thus be better informed (oh and less scared!).

My simple motto: “Hope for the best, plan for the worst”.  So if you know what you have contracted you have a chance for both of these.

Notes on Tests/Procedures Performed

During my entire "ordeal" numerous tests/procedures have been performed on me. I am writing this addendum to assist others understand what these tests are and what they should (or should not!) prove - oh and how it related to me.

• Blood Tests - too numerous to list!
• CT Scan (X-Ray) - detects bones, lungs & chest issues (hard structures) - trying to find cancerous growths
• MRI Scan - detects ligament, tendon, spinal cord (softer tissues) - trying to find tumors
• Pin Test - stick a pin in various locations (with you having your eyes closed) and tell them whether you can feel it or not
• Lumbar Puncture - (Celebrospinal Fluid - CSF), health of brain and nervous system, protein levels in spinal fluid (GBS/CIDP)
• Nerve Conduction Study (NCS/EMG) - for evaluation of paresthesias (numbness, tingling, burning) and/or weakness of the arms and legs.

The two that are supposed to be most relevant to diagnosing GBS or CIDP are the last two, in my case the initial protein levels (June 2011) were 2,000+ mg and later (Feb 2012) were 700 mg, then normalis around 500 mg, so very high first time and high the second but not excessively.

The EMG tests (again carried out in similar timescales) came back as slightly low in the right leg and normal in the left hand from the first test and similar but in the left leg and right hand for the second. Please note that some consultants say it does not matter which arm/leg they use and others say it makes quite a difference!

The actual Neurological Consultant I have been seeing has the most unscientific test ever for detecting improvement or weakness! He asks that you push up/down with a specific part of your bdoy, whilst he applies force in the opposite direction (e.g. elbows up, thumbs out, index finger out, legs up/down...).  The results are then written onto a piece of paper with his score on your strength out of 5.  This is so subjective and prone to errors that I find it ludicrous - yet some of his major conclusions are based on this arbitrary test! (surely there must be a more scientific method?)

His all time favourite is with the feet/ankles whereby he wants you to push up and then down. Due to my RTA! I have severely limited mobility of my feet/ankles (especially upwards) so this test is totally invalid for me, as I will never score highly, yet every time he gets very concerned about my lack of mobility there (highest score 2.5 against 4.5 everywhere else, in Feb 2012) and ignores my comments about it being a bad test - which I find very frustrating! 

The Beginning

Where to start….. (this is far more difficult than it should be).

I will attempt to put things in to a rough chronological order, but due to the time lapse between events and me writing this they may not be 100% accurate. 

I am male, 51 years old, 186cm tall (just over 6’ 1”) and weigh around 69Kg (11st) – at the time of writing this.  I am not un-fit, have never smoked, drink a little and nowadays exercise similarly.  Other historical influences will become clear during this narrative. Before any of this occurred my weight was around 83Kg (just over 13st).

One massive thank you I must say is to my wife, 20 year old daughter, 17 year old son and my mother-in-law, whom without their assistance I would never have got to where I am now (never mind their patience and persistence!).

January 2011

For my 50^th Birthday my wife has arranged a luxury trip down the Nile and in order to go we need some vaccinations.  The trip is scheduled for Mid-February, so we go to our GP for the injections and come out with sore arm(s). Around two weeks later at the end of this month I am suddenly struck down by a flu-like virus that completely knocked me out for 4/5 days.

February 2011

Chaos in Egypt! Holiday cancelled – but that was the least of my worries as it turned out…..

I started to feel very lethargic, couldn’t even mow the grass without feeling knackered.  Had to “just go for a lie down!”.  I also noticed pins and needles in my feet/toes and they were continually cold – which is something I have never suffered from before. Put this down to getting old and tried to get on with life.

We did go on holiday to Malta, but I did feel tired after every excursion and this was not at all normal for me.

March 2011

Lethargy getting worse and feet still cold, starting to affect my work, as really struggling to cope with long days and constant driving around.  Decided to go and see my GP around the end of the month as I had given it long enough to go away on its own.

Initial visit to GP, she listened and took some notes and sent me for blood tests to the nurse.  Had the blood tests and waited for the results.

April 2011

At the beginning of the month was told I had type 2 diabetes (which is the controlled by medicine and diet sort, rather than injections). As both my parents were diabetics and had been for a considerable time, this was not a massive worry to me and I went away with some medicine (Metformin) and the testing kit, plus a diet sheet.  Had fun learning to test myself and my wife worked out what I could and couldn’t eat against a list provided (fun – no fizzy drinks, all diet stuff!).

However this had no effect on my legs/feet/toes, which were starting to feel a bit weird, like they didn’t quite belong to me.  More concerning at the time, was that I now had a band around my stomach that was feeling numb and I had less of an appetite.

May 2011

Went to the GP because of slackness on the right side of my face, it looked like it had dropped!  This was diagnosed as Bell’s Palsy, 10 days later I had it on the left side of my face too – this concerned the GP as in all her years of practice, she had never seen it down both sides before.  Proscribed steroids for 5 days – six pills per day, the symptoms lasted for a few weeks before gradually disappearing.  I did find out much later that this can be related to Sarcoidosis.

 I was in and out of my GP’s surgery, complaining about my stomach area, starting to have problems with bowel movement and eating significantly less.  Additionally I was starting to have walking/balance problems. I was sent to our local hospital (both initially as an out and then as an inpatient), which ran lots more tests, stuck me on a drip and proclaimed it was the Metformin tablets and I should change them. My tablets were changed to Gliclazide and informed that some people just don’t get on with certain types of tablets.  However I was getting very worried that this was not the whole picture and something far more sinister was happening.

Walking became increasingly difficult and I was so lethargic I could hardly do anything, yet sleeping was also difficult.  Towards the end of the month, we went on holiday and I had to visit a local GP because my ability to stand/walk was severely restricted, in fact on one walk I had just fallen over and was unable to move for a considerable time.  Due to an RTA (Road Traffic Accident) when I was 9 years old my right leg has always has been very weak, especially from the knee and below.  My right knee has been prone to give way for no real reason (other than I do not put the weight on it properly) and this was now happening with frightening regularity.

The GP advised we went home and sought urgent medical attention, so the holiday was curtailed.  I was now off work as well.

During our holiday, we visited a church and when I looked up to see the spire I nearly fell over backwards, as I really had more and more problems with balance and feeling in my legs.

June 2011

Further, increasingly worried, trips to the hospital and GP left people unsure what was wrong and I was now unable to walk anywhere at all and had to rely on my arms to propel myself around as from the stomach down I was becoming unable to do anything (yet my arms were fine).  I could no longer manage the stairs in our house so ended up sleeping on an air-bed in the lounge and efforts were made to make the trip from there to the downstairs toilet as easy as possible.

As I had private medical insurance, it was time to invoke it and I went to see a specialist in stomach and bowels.  He recommended a course of scans and tests which took place over the next couple of weeks.  I was gradually getting weaker and weaker in my legs and could no longer even stand un-aided, so it was obviously getting very serious.  I was admitted to private hospital to have a Gastron & colon-oscopy  (stick cameras in top and bottom!), as I could no longer walk I stayed in the private hospital and this specialist recommended I see a neurologist, and had other scans and x-rays of my spine and whole chest area, plus lots of blood tests.

The two camera tests proved there was nothing of concern up or down (good! – I thought).  However the scans/Bell’s Palsy revealed I had a condition called Sarcoidosis, which would require a biopsy to check how bad the condition was (with my lymph glands in my chest).  Also other tests revealed that I had a neurological condition, so I had nerve conduction tests (stick a large amount of current through various parts of your nervous system and see how high/fast you jump!), plus a lumbar puncture (a word of warning about these – they procedure doesn’t hurt too bad at all, but the pain afterwards does and lasts for quite a while, so ask for all the painkillers they will give you shortly afterwards! – I’ve had 2 now and both were very similar experiences).

Both the nerve test and the lumbar puncture came back that I had serious issues with my nerves and signals getting anywhere – in my legs, yet my arms were 100% (in fact I jumped so high and quickly the consultant actually apologised and reduced the current significantly after the first test!).  This confused them massively from two viewpoints:

1.       The words GBS were mentioned, but this had taken too long to occur, so it couldn’t be that

2.       My stomach and legs were affected but not my arms or breathing, so again it didn’t fit

It was then first muted I may have the much rarer CIDP – but things still didn’t totally add up.  So the hospital started to run rigorous tests on my breathing, waiting for this to deteriorate and then wait for results of the biopsy.

I was transferred to another private hospital for the biopsy and this was run and I was then (in theory) transferred back.  This is where it started to go wrong! I was taken by ambulance back to the first private hospital, who refused to re-admit me, due to the fact that I had been initially admitted by the gastroenterologist and it was no longer his case.  In tears I begged them to keep me in, but they refused and I had to get my wife to come and take me home.

This was the worst day/night of my life! As I ended up spending the entire time on/next to the downstairs toilet as I had no idea when I would go and minimal control either.  The next day my wife phoned our GP who referred me to the NHS hospital.  An ambulance was sent to pick me up (lying on the floor, soiled and in considerable pain), they stretchered me to the hospital.  I was admitted to a general ward.

BTW: the results of the biopsy showed minimal issues and though I did have Sarcoidosis it was not particularly malignant and would just need an eye kept on it in the next 6 months or so.

Numerous drips (as I was very de-hydrated and pale according to them) and blood tests from the veins and arm later, the same neuro-consultant who had seen me privately turned up at then NHS hospital and confirmed I had CIDP (at last this problem had a name!).  My weight had dropped from 13st to just above 10st! I could not feel anything from my stomach down and my legs looked like I’d come out of a prison camp! (as virtually all the weight I had lost was muscle)

I remained in this ward for a reasonable time and was given pain-killers and medicine to assist with bowel movement.  I worked out a routine with a chair next to my bed how I could get from the bed to the facilities and back again, under my own steam.

July 2011

About one or two weeks into my stay at the NHS hospital, the neuro-consultant recommended a treatment called IVIG (no I am not even trying to type out this one!).  It was a plasma replacement treatment that was designed to assist patients still “on the way down” to recover quicker and start “on the way up!” (these are the consultants words), it would take 5 days.  The problem was that I knew I was actually getting better at this stage, though the consultant was convinced I was not! The basis for his prognosis was that I could not lift either of my feet off the bed and that I could not push “up” with my feet from the ankle.  I kept pointing out to him that this was the very worst test in the world for me, as due to my RTA I had considerably reduced/limited vertical movement, I never did have and so the test was invalid.

I started to see some neuro-physiotherapists, who started to give me simple exercises to keep me moving and get some strength back into my legs, one interesting point throughout all this was their continued wonderment about how/why my arms were not impacted and that I had full capabilities in this area.

After a few weeks when it was clear I was improving, I was moved to the neuro-recovery unit, along with other people who were recovering from strokes etc. This was good as there were physio-therapists on the ward full time and they devised a stringent routine for me to recover as quickly as possible.  My main problem was that I had gone down so far and my muscles had deteriorated so much that I had to learn to walk again, right from the start. Also I still had considerable lethargy so if I pushed too hard I caused myself more problems. Also as the nerves were recovering at around 1mm per day – it could take up to 3 years for me to recover fully (if I ever did! – that would teach me for being tall). Although I have been told since that the nerves had not been destroyed, just the sheath round them; so it should not take very long to recover at all!

The recovery was slow but I was happy I was on the way up!  Boy was I bored!

August 2011

An occupational therapist came to my house and recommended changes to be made so that I could then go home (Yes!). These included a seat for the downstairs toilet, a bath seat, rails in the bathroom (which had already been fitted by a friend), a higher seat for the lounge (borrowed from my mother-in-law), plus a set of bannisters for the outside of the stairs.  Along with a number of aides: Zimmer frame for upstairs, one for downstairs, two walking sticks, a perching stool so I could make myself a drink…..

Once all these changes had been completed I could go home (YES!).  At this time I had managed to walking using two sticks (or a frame) and despite some falls could actually get upstairs!  It was decided however that I would remain downstairs for a while for my safety and the sanity of my wife (as I was getting up to go to the bathroom at least 3 times a night).

The big day arrived I was discharged and came home (you have no idea how good this felt!) and even though I had to stay downstairs the relief and happiness I felt was extreme.

September 2011 – December 2011

A long series of physiotherapy, hydrotherapy and exercises to do at home, to get some muscles back in my legs and as the feelings slowly returned so did the strength.  Gradually the sensations returned, but large areas remained numb and the most difficult part was sensation of slopes and how to cope with them!  I had to see a slope and then adjust manually, otherwise I fell over (which happened anyway!).  I progressed from frame to two sticks, to one stick (advice get one suitable for you height so you don’t stoop, being tall this was a bit more difficult and one with a proper grip handle helps as well). Home help was from my family which meant I didn’t have to do too much at all apart from get better.

In September I moved back upstairs into my bed (and that was a luxury) as I could get up the stairs on my own without too much drama.

In October I was passed by my GP to drive a car (though I had sent the forms to the DVLA – they still hadn’t finished pontificating, at the time of writing this they still haven’t made a decision!).  This was necessary for me to get back to work.  I have changed my car to an automatic, to make it easier to drive. Over time I have driven further and further without too many issues, just stopping frequently and knowing when I am tired.

In November I started doing some work from home, only small amounts at first, as I would get tired very quickly, but began to build up the periods and effort during the month.

December, I used up all my outstanding leave to use the month as holiday so I could be ready to go in January. Physio and exercises having slow but positive effects, back to around 50-60% feeling in my legs and similar in strength.

January 2012

Went back to work full time, though could work from home for 3 days a week. Such as relief to get into the swing of things, gradually hoped to be able to visit customers and get back to normal!

Had symptoms of numbness around the back of my hands and lower arms, also tingling in my fingers and down my arm, ignored this for 2 -3 weeks and then decided to go to GP and get it checked out.  GP checked for trapped nerves, referred me to specialist so made a private appointment to see the same one I had previously as he knew my history.  He organised a scan of my spine and the results came back negative.

February 2012

In Southampton General after more tests in by private consultant, he reckons there has been severe degradation in reflex response, so need to have tests done and urgently.  Had large amount of blood tests and a lumbar puncture performed, results came back inconclusive to CIDP relapse, so given a choice of two treatments, steroids at home (with risk of high blood sugar levels – whilst taking them) or IVIG at Southampton.  Depending on the results of which I chose they may need to perform the other (if I do the IVIG 2^nd they can perform it at Portsmouth – which is much nearer to home!).  I chose the Steroids first and to go home.

Steroids 60mg every other day, kicking in and causing some discomfort (migraine/headache over left eye for around 4 hours turns to muzzy head, slightly dizzy, not feeling well, plays havoc with my diabetes).

Seen doctor who has said these side effects are nothing to worry about and hopefully they will diminish over time.

Been back to the consultant who has stated the steroids seem to be providing some +ve results and I do seem to be able to "feel" the ground with my feet for the first time in ages. Areas are still definately numb. The consultant stated there are still two possible issues, relapse of CIDP or Sarcoidosis, which they are going to carry out further tests for, plus I need to have an eye appointment to check on my glaucoma.

Long term usage of steroids is not good for you and I now carry a blue card to this effect as I could go "cold turkey" and suffer serious withdrawl symptoms of they are just stopped. Need some calcium like intake, though not directly calcium in case I do have Sarcoidosis and I need the calcium due to the soft bone damage caused by the steroids.

Also starting to reduce the dosage of steroids next week.  Approach appears to be very hit and miss as all they will do is reduce the dosage (50mg next week, 40mg the week after) and see if there is no further improvement or a reversal.  Depending on what happens this is where I will remain (which could mean steroids for the rest of my life)!  No one will comment on this as they all refuse to be drawn.

March 2012
Back to work! Lets see what the future holds.  Mentally seem to be OK, physically still improving and have a fair way to go. I seem to get tired very easily and apprently this is common, like everything else it may never completely clear.

Having to answer questions about what can I do, is it safe for me to...... and I just don't know the answers (no-one does, my doc has no idea and refuses even to answer the question in the vaguest way).  All I can do is take 1 day at a time, try and do something and see if I am OK aftewards.

Seeing the consultant on the 13th to check on the effects of reducing the steroids and my continued improvement (or not). The Calcium, replacement is a hum-dinger, take once a week, sit or stand for an hour afterwards (do not lie down!) and don't eat anything in that period either (apparently it burns!) - getting the stuff tomorrow (Friday 2nd).  As for the Sarcoidosis going for a scan later in the month.