Andrew’s PN Journey Timeline
Before Diagnosis

Firstly a few ‘markers’ before my diagnosis that may or may not be relevant to my peripheral neuropathy journey.
Born in 1951, first diagnosed in February 2017.

Childhood years:

From memory, I often had cold feet in the winter, sometimes numbingly cold.
My feet have always been ‘skinny – bony’ not ‘fleshy’ with high arches (feet did not sit flat on the floor). I noticed this at school when us boys were all getting changed for PE. My feet were different to the other boys.

It did not affect my childhood in any way, I was in the school Rugby team, played in goal a couple of times in the School football team and I loved athletics, 100 metres, Relay team, Hurdles and High Jump, becoming year champion for most years in some of these events during my secondary school years.
I lived in China for just about 10 years leaving and returning back to the UK in October 2016.
Always led an active life, enjoyed walking up until:

2016

In the year before my PN diagnosis I was noticing a little loss of balance sometimes, no pattern just random occurrences mostly, if I turned suddenly without thinking or was ‘looking up’ for some reason (as you do) I would lose my balance.
Also sometimes, a slight stiffening around my ankles but nothing alarming to me.

Although I was living in a sub tropical climate (hot most of the year) I was starting to notice my feet often felt cold all year round, especially noticeable before going to bed. I was going to bed with cold feet, pale in colour and waking up in the morning with pink, warm feet.

One more memorable incident happened early in 2016. I was on my way somewhere and needed to catch a bus, as I was approaching the bus stop (50 yards away) the bus pulled up and I needed to run for it.
I found I could not run, just putting my leg forward to start running just didn’t seem to work. I could walk fast but trying to run just felt alien to me. I could not run in a coordinated way and to this day, I can no longer jog or run.

I was wearing most days flat footwear, sandals and flip flops and put most of the issues down to my footwear coupled with just getting older.
Looking back, I foolishly paid no real attention to any of this.

Early in 2016 I had made the decision to return to the UK (reasons unimportant but none health related), tickets booked I left China in October and found myself back in the UK.

Over the years I have flown many times long haul (10hours +).

This trip, this time, China back to the UK was different.

Firstly, on my way to the airport I slipped over and fell heavily, leaving me with a huge bruise on my left side from my knee up to my waist. I’ve never fallen over like that before. Why I fell, not sure, at the time I told myself I simply slipped!
It was probably not a good idea to be sitting for many hours on an aeroplane later that same day.

I noticed whilst still on the aeroplane my ankles were quite swollen and as I was sitting for long periods, although I was getting up and walking up and down the aisle a few times, I was struggling to walk easily.
It felt uncoordinated, nothing seemed to be normal and just ‘flow’ like it normally did.

It all came as a bit of a shock, normal everyday things that I had taken for granted my whole life were now appearing to not function properly.
How can it be that I’m struggling to walk, walking upright is what makes us human.
My thinking at the time, it must be the result of the fall or could it be DVT (deep vein thrombosis) issue.

Once back in the UK after a few days the issues started to improve, walking was becoming much easier but the bruise remained so I was still thinking it must be the fall, DVT, the long haul flight or old age.

Have you noticed at each development I’m finding some justification (old age or anything else that springs to mind) for what was happening to me.
Looking back it was ignorance on my part, I had never ever heard the term ‘peripheral neuropathy’. I had no experience of anyone ever mentioning it.

It was my family that finally insisted I should go the doctors when the bruise persisted and my walking coupled with an occasional loss of balance they witnessed were causing them concern.

I saw the Doctor in December 2016, it was at this appointment that I first heard the term ‘A peripheral neuropathy‘ but at this stage it was only a possible cause and the Doctor needed to refer me to a Consultant Neurologist at the nearest hospital for further tests etc. for confirmation.
The Doctor also carried out the standard Romberg Test which confirmed to him and me that my balance was ‘not right!’ although at the time I did not know it was a Romberg test.

I use this term ‘A peripheral  neuropathy‘ a lot in this explanation because it was this phrase both the initial Doctor and Consultant Neurologist used both in explaining to me and the follow up confirmation letter I received which at least gave me a diagnosis, a cause of my symptoms, a name, a label and a title for my issue and strangely at the time, a little peace of mind as well.

But it gave me no real understanding and very little in the way of knowing what might come next or knowing how it might effect my day to day living, will I end up in a wheelchair, so many questions.

Over time I found myself going online to discover as much as I could in the hope I could find some answers.

Summary of my symptoms at this stage (2016):

A little loss of balance sometimes when out walking.
Almost immediate loss of balance when I closed my eyes.
Often feet felt cold. Cold when going to bed and warm in the morning.
I could no longer run or jog.
I did fall over on the way to the airport.
Long haul flights were now causing, swollen ankles and walking issues.

On reflection, the positives in 2016:

I was still walking upright, straight back, head up and looking forward into the distance as I walked. (this becomes more relevant a little later on)

Timeline to be continued…My PN Journey Timeline After Diagnosis