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Karen's Story

Functional Neurological Disorder (FND) were not words that were in my vocabulary until coming face to face with them for the first time in November 2019.

Following my confirmed diagnosis of Myasthenia Gravis in March 2018 by a Neurologist, my condition remained mild and stable to the point I was considered to be in remission for a period of time.

Unfortunately, this was not to last and in October 2019 I was admitted to Neurology for IV therapy and commencement of oral steroids to suppress my immune system in the hope that it would bring the Myasthenia Gravis under control.

It was during this inpatient stay that I began to experience things that at the time I could only describe as puzzling and extremely frightening. 

Following a day of feeling well from my Myasthenia Gravis symptoms (facial and arm muscles were stronger, my eyelids were less droopy, I found it easier to swallow and breathe) I was feeling excited at the prospect of seeing my family who were coming in to visit me in the early evening.  When they arrived, I informed them of my progress, and they were delighted to see I was looking so much better.  However, within 10-15 minutes of their arrival, I began to experience difficulties in swallowing, I was displaying slurred speech, I was struggling to keep my eyelids open, lifting a drink was challenging and keeping the drink in my mouth without it dribbling out was impossible – all of which are characteristics of myasthenia.  I withdrew into myself as I tried to focus, particularly on swallowing.

One of the nurses came to check my obs and noticed that I wasn’t looking quite as perky as I had been earlier on in the day.  She asked what was wrong and I explained to her that, and I quote “everything myasthenic has just kicked in all of a sudden”.  She called for the doctor who came to speak with me and examined me.  We talked about the fact that Myasthenia Gravis does not have such a rapid onset of symptoms, it’s a very gradual deterioration as the muscles become more fatigued.  I suggested to the doctor that it may be as a result of my health anxiety that I had developed following my diagnosis of Myasthenia Gravis in 2018.  She thought it may be a possibility and we should explore and monitor it further.

My family left earlier than planned as they wanted me to rest.  Approximately half an hour after they had gone, my ability to swallow, keep my eyelids open, speech and muscle weakness had all returned to normal. 

Over the next week or so my Myasthenia Gravis symptoms fluctuated, some days were better than others, but this is a recognised pathway for this condition (patience is something you need in abundance – and something I lack!).

After 2 weeks in hospital, my consultant began to speak with me about a phased discharge home.  Understanding my anxieties, she suggested perhaps going home for dinner in the first instance and if I wanted to stay overnight I could do so and advise the ward.

Leaving the safety of the hospital was very anxiety inducing for me, whilst I desperately wanted to be at home, the thought of having an episode where I was struggling to breathe or swallow with no immediate access to medical intervention absolutely terrified me.

However, I knew I had to take the bull by the horns, and we agreed I would go home the following afternoon with a planned return the same evening or the next morning depending on how I felt.

My partner and two excited young children came to collect me from the ward, I felt rather overwhelmed but didn’t want to show this, so I tried to suppress how I was feeling and painted a smile on my face.

When we arrived home my partner had cooked dinner and we sat at the table to eat.  Almost immediately both of my hands began to spasm, I was picking at my food as my hands weren’t working and when I put food in my mouth, I couldn’t chew, my teeth would not come together, and swallowing was a challenge yet again – particularly as the food could not be chewed.  I didn’t say anything but went to the bathroom where I flattened my hands on the wall tiles but as soon as I removed them, they went into spasm again.

So many thoughts were running through my head, and I convinced myself, not for the first time that I must have something else seriously wrong with me such as a tumour, MS or MND – or I was losing my mind.  I eventually returned to the table, continued to pick at my food then excusing myself saying I wasn’t hungry.

I stayed at home that night and slept quite well under the circumstances however, come morning as I attempted to take my medication, I could not swallow, I choked on my tablets as I felt my throat close.  I returned to hospital almost immediately and with this knowledge, the symptoms again began to improve.

On my return to the ward, my neurologist came to see me and asked what had happened.  When I relayed everything to her, she informed me that she believed I had functional neurological disorder (FND).  She explained that FND can occur in people who have a neurological condition, when it often mimics the symptoms that you experience from your neuro condition but the difference being they can often appear and disappear quite rapidly.

I was already under the care of neuro-psychiatry to support me with my health anxiety, so my neurologist contacted her colleagues to advise them of this new development.  The plan was to review my anti-anxiety medication and commence Cognitive Behavioural Therapy (CBT) which is a recognised treatment for FND.  I was fortunate to begin this as an inpatient, so treatment started almost immediately which I was extremely grateful for as I wanted this ‘fixed’.

As I tried to process this new diagnosis in my head, I found it difficult to understand how this could occur.  How was I now regularly unable to do basic things that I had been doing naturally for 40+ years when there was nothing physically wrong with me?  i.e., If my central nervous system was not damaged, it was more interrupted, causing this dissociative behaviour between my brain and body, why could I not just give myself a shake? 

I was discharged home from the neuro ward after 3+ weeks by which time my neurologist was satisfied that my Myasthenia Gravis was steadily following an upward trajectory.  The complicating factor for both of us was the functional symptoms as it was extremely challenging to distinguish whether my symptoms were truly caused by Myasthenia Gravis, or the FND was at play – or a bit of both.

On discharge home, on a daily basis I continued to experience hand spasms, drooping eyelids, muscle fatigue, chewing and swallowing difficulties.  After a few days at home, it reached a different level when I began to experience complete paralysis from the neck down and drop attacks.  Both of these things were utterly terrifying and unfortunately there were not isolated incidents.  As these were not characteristics of Myasthenia Gravis, I again convinced myself that another neurological condition was at play.

It is important to say that I have always and continue to have absolute trust and faith in my neurology team and we have had open communication and joint decision making from the outset so for me to even consider that something else was wrong that they had either not picked up or were hiding from me was ludicrous but when you are in a heightened state of anxiety, your brain makes you think anything is possible.

Whilst I had turned in to an avid ‘Googler’ on health conditions, my searches were not particularly conducive as I would often look at the worst case scenario and catastrophise my symptoms.  However, on being guided towards the site, I began to soak up the information on FND and was fascinated at the power of the brain and the fact that it could dissociate itself from the body which resulted in the physical symptoms I was experiencing.

The intermittent paralysis and drop attacks continued resulting in frequent presentations to the Emergency Department as my head took a serious knock every time I fell.  The best way for me to describe the drop attacks is seeing those horrific images of the World Trade Centre’s Twin Towers in New York falling down…….the vision of each stack of the building collapsing is what I felt was happening from the top of my head, down my spine and into my legs before slumping to the ground in a heap, always falling backwards on to my head.  So, after half a dozen too many drop attacks (some of which were in front of my 7 and 4 year old children) I knew I had to do something more radical so, I booked a hypnotherapy session.  Initially after the first one I didn’t feel any better but a few days later I was up and walking, attended a parents evening at my daughter’s school where I joined in with yoga and dancing, I couldn’t believe it.  This lasted for approximately a week then I started to feel as if some symptoms were returning.  I booked another session and that was the last one that I needed. 

From then on, I slowly went from strength to strength until piece by piece everything started to improve.  By March 2020 I had fully recovered from FND.  I don’t believe any one thing helped my recovery, I think that a combination of medication, CBT, hypnotherapy and a huge dollop of determination got me through this as well as the never faltering support from my neurology team.

Unfortunately, I contracted Covid-19 in late March 2020 and ended up in intensive care.  Following my discharge and recovery, I alongside my neurology team waited with bated breath for my functional symptoms to return…….they didn’t!

However, in November 2020 I went in to myasthenic crisis and was again admitted to intensive care before being well enough to transfer to neurology.  And along came my old friend FND.

And so, it started all over again, in many ways much stronger than the first time but although it was awful and I was still frightened by it, most of the time I could convince myself that if I could beat it once then I could do it again – and I did.  By April 2021 I was ready to return to work on a phased basis and from home.  I began to do more things with my children again, see friends, cook….all of the things I’d been unable to do whilst I was in my functional cocoon.

Since then, I have fully returned to work (I hold a senior management position with the NHS), I am a crazily busy mum of two amazing little humans who are delighted to have their mummy back and I am enjoying life again – as much as any of us can under the current circumstances.

I appreciate not everyone can recover from FND but so many of us can.  If I could tell you exactly how I did it, I’d bottle it and happily share it with you all because no-one deserves to experience this but there can be light at the end of the tunnel, and I am living proof.