30/08/2023 - 'How did we get here? Part III' by Alice

David’s neurology appointment starts with all the usual questions about his demographics, past medical history and how many beers he likes to drink.  Then we move onto the symptoms – the neurologist jots it all down while working through his questions methodically.  He doesn’t comment much on any of this but then takes David off to an examination room and asks him to strip down to his smalls.  David is reluctant to get his black toenail out – a casualty from someone treading on his foot at the Isle of Wight festival.  I sit alone in the main room while I hear the doctor asking him to look up and down, walk heel-toe, push-pull with his hands, stick out his tongue – the list goes on and David gets the full works.  All the while the doctor makes no comment so we don’t know what he is discovering.

We regroup in the consulting room for the verdict.  He concurs with David’s GP that there are abnormalities on his clinical examination.  Much to his horror, he tells us David needs another MRI scan – this time of his neck.  Turns out, some of the symptoms could potentially be attributed to a narrowing of the spinal cord – and this could be degenerative bony changes or even caused by his fall in January so needs to be done to be on the safe side.

At the end of the appointment, the doctor asks us ‘so do you have any ideas of what you think could be going on here?’  This question is perhaps a small test of our level of insight. I immediately tell him I think David has multiple sclerosis.  ‘No, this is highly unlikely’ he replies.  His brain scan was normal and the symptoms do not support this diagnosis.  ‘Anything else?’ the doctor presses.  ‘Could it be Parkinson’s?’ I ask.  I don’t know much about Parkinson’s but David’s uncle had this disease so it was a remote possibility that we thought could have been on the cards.  ‘Definitely not that’ he says.  So then I have to ask… ’Ok, well then could it be motor neurone disease?’  The doctor looks directly at us and tells us this is not something he can diagnose or exclude on one examination alone and that David needs an urgent electromyography test done, along with a barrage of blood tests.  This to me sounds bad as all our other suggestions were dismissed with the wave of a hand and MND was not.

We stand outside in the corridor for a debrief.  It is truly amazing how people process news differently at appointments.  David gets outside and breathes a sigh of relief.  ‘Great news then, I don’t have multiple sclerosis’.  I look at him in total disbelief – were we at the same appointment?  ‘No, David, you don’t have MS but he said he can’t rule out MND’.  Turns out David hadn’t really absorbed that bit of information – possibly due to the distress of knowing he has to endure another MRI and not hearing much more after this.  Reality starts hitting hard at this point and we truly start to realise MND is now a real possibility.  There is not much I can say to David apart from promising I will be there for him and that I will look after him.

After this, things moved at lightening speed.  We saw the neurologist on a Tuesday and he was called for both his MRI scan and EMG test two days later on the Thursday.  This was unfortunate timing for us as I was due to go wedding dress shopping with David’s eldest daughter Rachel in the morning at the same time as his MRI appointment and of course, I couldn’t tell her what was going on.  David was terrified at the prospect of another MRI due to his claustrophobia so we popped down to radiology to talk it through with a radiographer and ask how they could make the process easier this time around.  They told David they would slide him in much more slowly, not strap his arms down as they had previously and that he could have someone in the room to hold his hand but of course, I was not free to do this.  We came up with the solution of my work colleague going down with him.  I had already confided in her about Dave’s symptoms as she had previously worked in neurodegenerative research and not helpfully for her, but helpfully for David, she also suffered with extreme claustrophobia so was far more empathetic than I could ever have been.  In fact, I had an MRI brain scan myself for a research study this year and found the experience quite fun so couldn’t relate at all!

I had the most wonderful morning shopping for a wedding dress with Rachel and her family and we all knew when she put on ‘the one’.  There were tears all round and I know David will be so proud of her on her wedding day.  I had to do a bit of phone checking during this process though, waiting to hear if David had managed to get through his scan and then I had confirmation he had made it through with no panic attack so I could then relax.

Now onto the next hurdle in the afternoon, the EMG test.  We had a contact in neurophysiology who had pre-warned us that if there was any suspicion of MND, the test needed to be conducted by a doctor and when we turned up to be greeted by a consultant, we knew this was a bad sign.  Despite being a qualified nurse for 16 years, I had never actually seen an EMG test but luckily, they were quite happy to let me watch.  The first thing that happened was that the doctor asked David to stretch his legs out, which immediately causes him to cramp up and took a while to relieve.  The doctor didn’t bat an eyelid and just gave him time for the muscles to relax.  There were lots of needles involved in this test, it was almost like acupuncture although a lot less relaxing.  It is quite a bizarre test to witness as the nerve signals from the muscles make a crunchy sound you can hear when they move!  We had no idea what we were looking for or what was abnormal but when the needles were inserted in the feet, calves, thigh, hands and chin for testing, we could see the blips on the screen where they were twitching of their own accord.  Electrical stimulation was sent down the needles and caused David’s limbs to jump – an experience he says was not painful but uncomfortable.

When the test had finished, I asked the doctor if he can give any indication of his findings.  He tells us he needs to write a report which he will send to the neurologist.  Unsatisfied with this answer, I look him square in the face and tell him we are fully aware of what this test is for.  He simply replies, ‘I can only confirm the test was abnormal’.  David had a boat to catch so we said a quick goodbye at the hospital entrance without much dialogue exchanged between us.  There doesn’t seem much more to say at this point.

On Monday 17^th July, only six days after our first consultation with the neurologist, I get an email from David while at work that simply says ‘the neurologist has called and wants to see me in his clinic this morning.  I feel sick’.  This makes me feel sick too.  I tell my manager what is happening and in anticipation of bad news, we both pack up our things and take them to the appointment in case we cannot return to work afterwards.

And so we found ourselves back on the plastic chairs in the neurology out-patients waiting room.  Again, we don’t say much however, we do acknowledge that this appointment is make or break and our lives might be about to change forever….