Update 35 - Pains & Fatigue Explained

This follows on from my previous post and the unsatisfactory answers I received about fatigue from a neuro-consultant. I know a physio who deals with GBS/CIDP on a daily basis, so I asked her the questions I asked the useless consultant. Below are my questions and her answers:

Questions:

I have a number of questions specifically about CIDP:

1.        Why do I still feel fatigued doing normal things and if I do a bit more it seriously takes  it’s toll? (I am like a battery and if I use the charge too quickly the re-charge timeframe is significantly longer than if I keep to minimal running levels)

2.        My toes and feet still get stabbing pains at night which wake me up and so I don’t get too much sleep, is this normal/usual?

3.        My improvements in feeling seem to have either slowed down or stopped, since I came off the steroids – maybe that is a co-incidence – will I ever get close to full feeling again?

For all these questions I wonder whether I have now reached what will be “normal” for me from now on?

I saw a different consultant a short while ago and his answer to the first 2 were “It’s because you’re getting older and to be expected” which I found to be totally unhelpful and whilst relevant for people in general, wasn’t necessarily relevant to people like me who are supposed to be recovering?  I am now waiting to see my usual consultant Dr Gibb as I really felt this new one was a waste of time and frankly condescending towards me.

I am aware that you are not a consultant, but you have real experience about CIDP and see it every day (and I trust your opinion and that you will be honest with me).

Answers:

As you rightly say, I am not a consultant; I shall attempt to answer your queries based on my clinical experience and research knowledge. Please remember these answers are my opinion and far from definitive.

1.      Fatigue: this symptom is a tricky beast. Fatigue in CIDP is likely to be a combination of central neurological fatigue and peripheral neurological fatigue. The mechanisms of these phenomena are not well understood. Current understanding is that peripheral fatigue acts much as you describe: activity beyond a certain threshold leaves you feeling fatigued with an extended recovery period. These effects can be measured in the muscles. Central fatigue is more complicated; it involves changes in the brain in response to signals received from nerves in the body. Central fatigue causes the perception of fatigue without corresponding physiological fatigue exhibited in the muscles. Obviously each individual with CIDP is different and the course of the disease and the symptoms are variable from case to case.

Your CIDP fatigue symptoms are probably a combination of peripheral fatigue (thanks to the interrupted conduction of your damaged peripheral nerves) and central fatigue developed as a knock on effect to "signal failures" in the body. So if normal activities are leaving you exhausted it may be logical to assume that you are suffering mainly from peripheral fatigue:  if you do more activity than a certain threshold you become exhausted. The best way to treat peripheral fatigue is with very gradually progressed exercises during which you work to your threshold (and expect to feel tired afterwards). Gradual progression can slowly lift your threshold. The idea is to maintain exercises (which tire you out) in order to keep your peripheral fatigue threshold above that of normal daily activities. Thus normal daily activities cease to drain your batteries, but exercise still does and should (up to a point of course).

As you have also had CIDP for a while now, so it is very likely that central changes have developed too. This makes your fatigue more complicated, because central fatigue can make you feel exhausted even when your body has not reached its threshold. Central fatigue is like a programming error in a computer, so your brain receives "normal signals" and interprets as them as exhaustion, this makes you feel dreadful and is just as functionally limiting as peripheral fatigue. Central fatigue is more complex to manage. Cognitive Behavioural Therapy has been demonstrated to be effective in some neurological conditions, as has gradual exercise (to a certain extent). However central fatigue takes much longer (years) to reset than peripheral fatigue, and it often seems like it is unconquerable. This can lead to people becoming discouraged, which frustratingly can actually make the central fatigue worse. This is because mental wellbeing has a significant impact on the brain changes involved in central fatigue. Because central fatigue is such a complex process of brain changes and it is influenced by such a wide range of factors, it is difficult to unravel for each individual and results in unpredictable episodes of fatigue even when peripheral fatigue is well managed. The best advice I can give is allow yourself time and keep a positive mental attitiude (much easier said than done of course!)

2.      In my experience night pains are not an unusual symptom to be reported in CIDP. It is important to try to mange these symptoms however because quality of life and central fatigue are both majorly impacted by chronic sleeplessness. There are a number of strategies you can try. The pain is likely to be caused by one of two mechanisms (or a combination of both): either small localised muscle spasms due to abnormal motor nerve conduction or abnormal sensory nerve activity giving rise to parasthetic sensations. The first can often be considerably eased using Quinine tablets (quinine is present in small amounts in tonic water too). The second can often be reduced using neuropathic pain killers (such as Gabapentin or Amiltriptyline). A third option can be sleeping tablets. It would probably be a good idea to discuss some of these options next time you see your consultant or your GP.

3.      Your sensory loss may stay the same, it may worsen or it may improve. Sorry to be so vague on this one. Every person is different and every case of CIDP is different. In general CIDP is a progressive condition, but it can be stable for long periods at a time and it may never change at all for some people. On the other hand some people experience huge improvements in response to therapy or reduced stress. The only way to know how it is with you is to "experiment". You could discuss with Dr Gibb going back on steroids at a low dose and monitor your sensation for a while; but bear in mind the side effects of long term steroid use. Also using steroids may not help the sensation at all anyway. 

        Alternatively you could try sensory therapies, although there is little evidence to support these. Sensory therapies include deep tissue massage, sensory challenges like putting your feet in warm water then swapping to icy water and back again and using different textures to run over your skin alternating between light touch (like feathers, silk and fur) and scratchy "pin-prick touch" (like hessian, sandpaper, Velcro hooks).

I hope this information is helpful to you.


Personally the above makes much more sense to me and I can cope with because I have an understanding of what is/has happened to me.  I have said a great big thank you to the Physio who provided these excellent answers and whilst she is not a consultant she certainly knows more about the real issues and impacts.

Update 34 - Confuse the consultant .COM!

I have just come back from seeing a (not my) consultant.  This is very confusing and not at all helpful.

As a patient I have been both private and on the NHS (this is because my private insurance does not cover "observations" and I can't afford £120 to see a private consultant).  Though my Neurologist (Dr Gibb) actually works for both! So an appointment was made for me to see him on the 19th of December, through the NHS, to see him.

Due to their wonderful NHS systems, someone decided (not either of the consultants)  that I was going to wait too long to see a Neurologist, so my appointment was moved to 20th of November and at a location further away.  I attended this appointment with concern.....

So my appointment was for 16:00 and one of the first things I noticed were a marked increase in signs and notices - one referring to "If you have to wait more than 30 minuted then talk to someone.about it!".  I hoped I would not have to wait anywhere near that long, however I arrived at 15:50 and it was 16:25 before I was seen. I was not best pleased!

The first thing the new consultant said to me was "Now could you please tell me about what has happened to you, as our notes seem incomplete?" - at which point I was even less pleased.  In the first place if I saw the same consultant then they would know and in the second place it should be on their system, so I should not have to go through it all again!  In his defence, as I had been part private and part on the NHS, the NHS did not have visibility of my private records, but even so, the actual information he had about my treatments and status were woeful.  Thus I gave him an abbreviated version, in not to polite a manner and expressed my concerns.

I explained, that whilst I can walk better than before I was not walking properly (for me) and thus my right knee was in pain every time I took a step, which though I could stop with strong painkillers meant that if I did that I would be on them for the rest of my life, so I just get on with it and ignore it as much as possible. What I really need to do is work out how to walk like I did before CIDP and then it would be fine.

We went through the usual, pin prick stuff and the relax your legs and push/pull and the "Oh your right foot seems very different to the left.....!" (Sigh!  - so I explained about my accident when I was 9 and that thus my right foot was three sizes smaller - Again!).  I really do think that this needs to go on my file as it is an important contributor to some of my issues and I keep pointing this out and they ignore it and ask stupid questions every time.

I then asked two questions:

1. Why do I get sharp pains in my lower legs/feet at night, that wake me up and thus only get 4 hours of good sleep?
2. Why do I get so tired every day and just can't do much at all either for exercise or for work, it was like a battery running down and needing a re-charge and the weekends were only for re-charging thus life was not "fun"?

Now the answers he gave I found condescending and completely unhelpful.

To the sleep/pains he stated that as I was getting older people generally got less sleep and due to the sleep cycles about 4 hours was what I was likely to get.  He also stated it was not the pains that woke me up (and reckons this has been proved). thus I woke up and then got pains (not at all convincing to me and my daughter wakes up with severe foot cramp, so according to him she wakes up and then gets severe cramp) borrocks!

To the second point on feeling tired, he also put this down to getting older and nothing to do with CIDP!!!!!!!! (What Rubbish! What a Pillock!).  I did try and explain about my survey of over 500 patients and that nearly everyone had fatigue issues, but he just wouldn't listen. He ought to try having this illness!!!

Thus my visit to the consultant was a complete waste of time!  Well not completely....

He has stated he would arrange another appointment for me with Dr. Gibb, though for 12 weeks time!

Update 33 - Health and Safety (Theirs!!)

I received an envelope for the very kind lady in the DWP, who I alluded to last time, and 4 weeks later have just received the standard mail response of thanks for your info......

The problem is it now says it will be 8 weeks before I get a response and my claim runs out on 23rd of November (and thus so do the payments).So instead of getting more efficient they are obviously getting less (a feat that I would have thought was impossible).  Also as I expect to have to appeal again this will take even longer. I don't know if anyone else goes through the same hassle, but now you can see the reason for the blog title!

Also my consultant appointment on the NHS has been moved from Portsmouth QA and to the consultant who has dealt with me throughout my issues, to Southampton and a consultant who I have never heard of or seen! (now please tell me where is the sense in all this?).  Plus from the notes I have seen they are very sketchy and incomplete so this consultant (who probably will be very nice) will be asking all the same details and going through all the same issues as my previous consultant knows very well! (e.g. the issues with my right ankle/knee due to my road traffic accident when I was 9).  Additionally I now have to get to Southampton for 16:00 which is at least 45 minutes on the way there and probably over an hour on the way back (due to the rush hour) when QA at Portsmouth was 15 mins at worst!

At least it will provide an up to date medical opinion for when I appeal to the DWP! (cynic?)

I have finished publishing all the statistics from my web survey. they can be found on a web site:

http://mycidp.weebly.com

I couldn't publish it all on this blog as it just wouldn't fit!  I am also putting my blog on the site slowly, but will continue to use this as the blog for now.

Comments welcome and I hope you find it interesting.

Update 32 - Me and the DWP!

OK - so I had to fill in their new form to our Department of Work & Pensions (DWP) to see if I qualify for any benefits again (commencing the end of November 2013).  All 39 pages!

The fun part is that as the UK has severe austerity measures in place they have changed the criteria for being able to qualify for benefits for being disabled in really significant ways!  (I hope this is not happening in your countries).  There is also more of a points system and you have to get a certain number of points across the form to qualify otherwise you do not.  This means that even people in wheelchairs may not qualify for the benefits and I find that disgraceful.

One example is that they said on the previous form could you walk 50 metres, how long and how easy/difficult, they now use 20 metres as the criteria!

It is also even more of knowing how to fill in the form and what to say, as they are looking for key words and phrases to score the highest marks on a question.  SO anyone who is filling these in, do not be proud, go to the citizens advice bureau (CAB) or at the very least get professional advice/assistance.  I have being doing an exercise program specifically designed for my by a physiotherapist who knows about CIDP (Yes!!!!) and I asked her advice - but more about that in my next post.

I filled in the form around the beginning of August, as best that I could and sent it back.  Before I sent it I scanned it in, bearing in mind my last episode with the DWP, where they lost my forms and I had to get my MP involved, before they would even admit to loosing it!

   I do not expect to get the carers allowance anymore as though there are some tasks at home I still find difficult to do (e.g. lifting a heavy pan and moving at the same time)  most of it is manageable as I have adapted how I do things. Plus I have family around to assist.

I phoned them up mid way through September, to be told they didn't seem to have received my form!  (oh no not again).  I then asked for an email address so I could send the saved copy to.  Now comes my mistake, I had saved the 39 pages as a PDF (Adobe Acrobat read only format, so it couldn't be changed and was dated when I filled it in), even worse a colour PDF!  This meant when I cam e to send it in, it was 21.5MB in size.  Anyway I sent if to this email address and received nothing back.  So I phoned the next week and was told they would have sent a reply if they had seen it.  So I uploaded it to the Internet and sent a copy of the link to them so they could download it - but they could not do that either!  Oh and why was I using that email address as it was the wrong one...... (I could have screamed).

Any way I  am now talking to a very nice lady (I could put her name in here, but incase she reads it I don't want to embarrass her or get her into trouble) from the DWP in Bristol who has given me the right email address and I have tried sending it again, but it is too large and she tried to get the limit increased but their IT function won't allow this, she can't connect to the Internet to pick it up (as her IT function won't allow it!), she has sent me a fax number, but I don't have fax capabilities without printing it off.......

So I have just completed printing it and have asked for confirmation of the address to send it to and maybe a very large envelope!

More in a while.

Update 28 - Down to Earth

Survey Delivery

So I delivered my survey results and it didn't go too well for a number of reasons:

1. I was put on last so the people I wanted to talk to about my findings, the doctors and professionals were no longer around.  I did not want to be put on last as I know this is the worst slot.
2. I was given a radio mike (which in years of presenting I have never used/required) which failed to pick up my voice every-time I turned my head to point/look at my slides, so after the third slide I took it off.
3. A number of the questions afterwards on why people didn't know about the survey and me saying it was because groups like the GBSSG couldn't/wouldn't advertise (never mind support me) was to blame, this was consistent around the world

I was not at all happy about my performance or the circumstances.  My opinion of the GBSSG (UK) is that they are very closed/cliquey and someone like me doesn't really fit in, so I am unlikely to go to another meeting (I tried!).

I did get a very interesting response to a series of posts at the event, whereby the general feeling is that people who attend these events have a very negative opinion of life and the diseases, the point was made these people still have issues and the majority who have got better are now getting on with their lives.

My Life

I am still slowly recovering... I am now off the Steroids completely and will see what impact/effect this has on me, but I was down to such a minimal dosage (10mg - from the original 60) anyway it shouldn't be too bad.  I just took a whole load of pills back to the pharmacist to dispose of (around 9 boxes of 5 different types).  So I am left with just Metformin and Glyclazide for the diabetes, so at last this should be stable - Yippee!

Still feel tremendously tired and working is very hard, somehow I don't think I will ever solve this riddle. My doctor told me  to have naps during the day but this just doesn't work/tie in with work, so I feel shattered at the end of each day and the weekends are just for recovery.  I suppose I am lucky to be able to get back to work.

I have just signed up for an exercise survey for GBS/CIDP and neuropathy related issues, and had a visit by a Physio who knows about these conditions and so understands the issues.  She has given me a 12 week list of exercises to do 3 times a week, they may sound simple to people with no issues but all are "fun" for me.

1. Stand on tiptoes and down 10 times slowly (I have to hang on to something)! Then flex my foot
2. Slide down a door (bending my knees) and up again 10 times
3. Lifting my knees (doing a clam) whilst lying down 10 times

Then I need to be on the exercise bike for 20 minutes of gentle cycling - this really tires me out and I should do this one 5 times a week.  So far so good, but it does depend on where I am working if I can do them all the time.

I will be publishing my results of the full survey sometime, just trying to acquire the latest version of MS Office, so I don't have to manually re-paste them all.

Will keep you posted.

Update 27 - Progress or Not

Where I am @

We went on holiday for a week and though it was great and I could get out, I have real frustration about how little I can do without causing severe issues with my health.  It seems like 2 steps forward and 3 back. I am back to my original weight though in all the wrong places and in order to combat this I shouldn't do much exercise... It seems like a continual spiral to me.

We went for a walk around part of an Island call Sark, just of the French coast, it was great to be out and the scenery and weather were brilliant. It was a real shame that I suffered so badly afterwards, as it is just the type of exercise I like doing.

The picture of me (and my daughter) is with a stick on Sark and boy did I need it!

I suppose the good news was no wheelchair :-)

Presentation of Findings

I am presenting my survey findings to the UK GBS Support Group on Saturday 20th of April in Liverpool.  This is a good opportunity to tell more people of my findings, I do wonder how many of the medical profession will take me seriously!  I also feel like making a statement about the 516 people who completed the survey for me, with absolutely no assistance at all from any of the recognised support groups. Just think how many I would have got if they had bothered even to suggest  to their members that this may be of interest! I am going to give it my best shot and maybe some of my findings will make them think, at least a little bit.

I still have many more responses than any "official" survey and the results are worth something to me.

A large number of people have corresponded with me to pass comments and say thanks.  That, has totally vindicated all the effort.

Wish me luck!

August 12 - Update 13

Sorry for the delay in posting, but been trying to redo the layout of this blog (as it has become rather large) and have been getting the survey results ready for publishing (hopefully both will be done by the next post - unless the consultants get there first, so watch this space...)


I have just managed to walk half a mile (approx) with the aid of a stick in my local woods.  Really great to be out and manage it, but was absolutely shattered at the end and sweating like a pig!  They say this is supposed to be good for you?  I chose a path that was flat and fairly even, but I had problems picking my feet up properly, especially when I got tired.  I also found put that I now do not walk as quietly as I used to, I saw a rabbit ahead and before I could get quite close without disturbing it, but this time as I saw him, he heard me and was off!

My brother was running a half-marathon yesterday in Sweden (I hope he did OK), my half a mile felt like a half marathon to me.  Still after sitting in the car for a while I was able to drive home.

My daughter graduated in Law from Cardiff:

I am really pleased for her and the hard work she has put in to get to this stage.  Now she has to do the LPC to enable her to become a solicitor, so one more year of effort left.  I managed to get to Cardiff to see the ceremony, which was great.  There was a fair amount of walking/standing which I found very difficult and tiring, but I managed it, in small doses and seats being found/provided at every opportunity.

One curious side issue with being disabled is that parking and access are treated differently throughout the country.  In Cardiff around the University there are no disabled parking space, but parking is free (so you have to fight for a space and hope it is not too far away - we were lucky), yet just abut everywhere else there are marked spaces, close to the facilities.  My local train station is brilliant as on one side you have to pay, but on the other you don't (because the disabled spaces are nowhere near the main parking area (so guess which side you park?)

BTW in a certain chain of Hotels, they no longer have disabled rooms, they are now "Universal Access" rooms!  What a load of baloney! Apparently they have been changed so a not to offend?  It was more offensive to me that they changed them, what a waste of time and money for the company, do I really care what I am labelled (maybe others do)?

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!"

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 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.