Andrew’s PN Journey Timeline Diagnosis 2017

66 years old

I saw the Consultant Neurologist for the first time 17th February 2017 and at this first meeting he confirmed that I had  ‘A Peripheral Neuropathy’.

I don’t really remember much of the meeting other than he asked questions of my history both in life and medical.
He carried out a further Romberg test, tested my leg reflexes asked me to walk the length of the consulting room (which was not very big) turn around and walk back.

He also asked me to describe my symptoms, which I found quite difficult as at this stage other than occasional loss of balance and cold feet there was not much else to say.
Also, the question of pain kept coming up at various stages and I had to keep repeating, I have no pain.

He told me that he needed more blood tests and an EMG (Electromyography) test to be carried out,  he made the appointments and I needed to wait a week or two. Peripheral Neuropathy tests explained

He also talked to me about how difficult it is to predict what peripheral neuropathy symptoms might show up in the future as everyone is different.
He did point out to me that I would be using my eyesight more for balance as time passed by.

I did ask about whether or not doing either more or less exercise would help but I remember thinking at the time he does not know the answer to this as he just said, “carry on doing with what you are already doing”.

He told me a story of how one of his patients was having trouble with corridors, plain walled corridors where there are no points of interest like pictures and things to focus on. This made much more sense to me a few years later.

I was told a confirmation letter would be sent, it arrived 1st March 2017. It appeared to be letter sent to my GP (Doctor) and just copied to me.
In this letter the consultant went into much greater detail with lots of new to me medical words, terms and phrases. More to learn.

Here are some extracts taken from this follow up letter:
There was some wasting of the EDB’s of the feet.
Reflexes were symmetrical, apart from absent ankle jerks, with plantars downgoing.
There was some mild heel-shin ataxia, but this improved when he watched his feet and leg.
Romberg test was positive.
Tandem gait was impaired.
There was no lymphadenopathy in his neck.
This gentleman does have a peripheral neuropathy.

Why everyone is different.

Another letter dated 21st March 2017, also addressed to my Doctor, also copied to me.

This gentleman’s recent neurophysiology has confirmed a peripheral neuropathy with some demyelinating features.
This consists of mild prolongation of the F- waves and some slowing of the tibial and perineal conduction velocity. However peripheral amplitudes were undetectable. I doubt very much whether this is primarily a demyelinating neuropathy.

I did go back for a follow-up with the consultant on 29th August 2017, it was in this meeting he referred me to a Physiotherapist and I did go along to see if they could help. They just showed me one or two leg exercises that I could do at home lying on the bed and that was that! I developed my own exercise routines later on.
In the confirmation letter from the consultant I received on 19th September 2017 there was now a ‘proper‘ diagnosis:
Peripheral Neuropathy – some demyelinating features.

So that was it. It’s official, I had PN with some demyelinating features.
Medical terms explained in plain English

But my PN journey was going to be suddenly thrown into turmoil.

About a week before my consultant appointment I was noticing that my left eye had become quite itchy so much so I contacted the local optician to have my eyes checked.
I thought is might be just eye strain, I had been doing a lot of peripheral neuropathy research online lately.

I never actually got to attend the optician appointment because walking home back from the shops on the 27th February 2017 and for no apparent reason, I was gradually over a duration of a couple of minutes losing the sight in my left eye.

It was as if a dark curtain was being pulled across my left eyeball from right to left.
This I guessed straight away must be something serious, luckily I was about a mile from the opticians where I had previously booked an appointment.

I walked up to the receptionist and told her that I did have an appointment booked for a few days ahead but I asked if it was possible to see an optician as I appeared to be losing sight in my left eye.
Actually at this stage I had now completely lost the sight in my left eye.

She apologised and said it may be possible but I would need to wait until an optician became available between their appointments.

I sat down in the waiting room. I did not wait long, about 5 minutes and an optician came over to me and asked if I could see anything at all, I told him that it was just dark grey in my left eye, with that he beckoned me into his consulting room.

He only took about a minute looking into my left eye and said, this is serious, I think you have a detached retina.

And just like that, everything suddenly went into overdrive, another optician came in and between them they carried out a full examination and while one was peering into my sightless left eye the other was on the phone to the local hospital eye unit trying to arrange for me to be accepted as an emergency patient in the next hour or so and explaining in ‘optician talk’ over the phone what they were seeing as they examined my eye.
It was all quite interesting, things can move quickly, sometimes!

After what seemed like a lifetime but only probably 10 minutes it was all settled.
They had ascertained that it was a complete detached retina (Macula off was the term they used) and that there was no gain to be rushed into hospital straight away, it was completely detached after all. If it had been partially attached I would have gone straight away as they like to get them before complete detachment. (makes sense, realignment would be easier)

So it was decided that I would go home, rest and sleep and return to the hospital next morning 28th February 2017 at 7.30am for surgery.

This I did and after a long operation my retina was back on.

I have been told since from multiple opticians that the surgeon had done a really good job and there was very little scar tissue.
And although, still today (2026) my left eye is not perfect vision, over the years it has reached a stage of being good vision albeit with some slight distortions.
My brain has made the necessary corrections to compensate for the distortions, all clever stuff but it did take about 2 years.

This is the actual operation procedure and treatment details:
3 Port Plana Vitrectomy
Cryotherapy
Gas Tamponade

It took about a week before I saw the any signs of vision again. It took many months before full vision was restored.

Now, let me explain why I needed to tell all of this and what in the hell it has to do with ‘My Peripheral Neuropathy Journey’.

It probably took in all about 12 months for my left eye to be close to normal again.
For the first few weeks I was out of action. I was told to completely rest for a month. This was difficult as I was living on my own.

Also lots of eye drops multiple times a day over a good many weeks, that was difficult for me to do and almost impossible to do without lying down and even then I managed a few misses.

I was told that reading was not a good idea and to stay off the internet, no eye strain. Even after my left eye sight returned I knew I had to avoid any kind of eye strain. So that put paid to my PN research.

I needed to wear a transparent eye patch for a week or two especially in bed for risk of my hand touching my eye whilst asleep.
In May 2017 I was back in again after the eye operation for a cataract removal and lens fitting operation. Apparently for some, a cataract forming is part of the healing process.

So, as you can imagine I was struggling with my balance a lot during this time.

My eye operation used a gas tamponade (A gas tamponade is a medical gas bubble injected into the eye in order to hold the retina in place after surgery) which at first blocked my vision but over a few weeks started to get smaller and as it got smaller it landed at the bottom of my eye and bounced around as I moved (walking etc).

It was very distracting and although I could partially see, the bubble bouncing around was really distracting and made walking (balance) difficult.
Also at this early stage there were still major distortions in vision in my left eye.

These issues showed up on my first visit to a supermarket after a few weeks.
Large tiled floor open spaces were difficult for me, as I walked the tiles appeared uneven,  raised and the whole floor looked to me like it was sloping.

The distortion and the gas bubble combined was causing big problems with my balance.
It took months for the healing process and my brain to compensate and correct some of these issues.

So, for all of 2017 and most of 2018 I found myself asking:

Is it the detached retina in my left eye or is it peripheral neuropathy that is causing my imbalance?