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My Story – C

I first realised that something wasn’t quite right with regards to my health on 5th November 2013.
Whilst out for dinner I began to feel unwell. Despite having had only one glass of wine I felt drunk. I awoke from my sleep later that night with severe convulsions, so violent that my body repeatedly and involuntarily went from laying in a straight to a foetal position.

By the following morning the convulsions had stopped, although my stomach muscles were continuously twitching. At this point I made an appointment with my G.P. During this initial assessment I was able to reflect that I had been very fatigued over a number of months, I had been having difficulties concentrating, sleeping, problems, word finding problems and stuttering speech. During the examination my body again began to involuntary move – this time with my head, shoulders and arms shaking. Whilst I did not consciously feel particularly stressed, in consideration of my presentation, busy work and family life, it was the G.Ps assessment that my physical presentation was a manifestation of stress. I returned home with a prescription of muscle relaxants.

Within a few hours of returning home I took a turn for the worse. I lost all control of my body muscles. My entire body, including my face was shaking and spasming. I could not stand upright. My arms and legs were contorted into bizarre postures. I collapsed and was unable to walk unaided. I found it very difficult to talk and found myself getting very confused as I tried to construct sentences.
This was ultimately a terrifying experience, not just for myself, but for my children who were alone with me.

Admitted to hospital that night, my condition steadily seemed to deteriorate.
Despite being given intravenous medication in an attempt to control the convulsions there seemed to be little change. I was also experiencing sensory problems. My body muscles contracted so tightly at times that I struggled to breathe, requiring oxygen. On one particular occasion I stopped breathing and my heart stopped beating.

Over the course of a week it became apparent that I was having blackouts – going into a trance like state, and having seizures. I did not believe that my presentation was resulting from stress, particularly as I had not consciously felt overwhelmed by stress.

After a week I was transferred to another hospital with a specialist neurology unit. I had countless tests and examinations including MRI, EEG and lumbar puncture. Whilst my physical presentation had not changed and was evidently observable – all these tests came back clear. It was after this that I was diagnosed as having a functional movement disorder. At this point I was sign posted to a website by Dr Jon Stone, an expert in this field, to help understand the disorder.
I recall becoming very emotional when initially reading up on the disorder. The site highlighted that stress and past emotional trauma can be a significant contributory factor to developing this disorder, although is not always the causative factor. I had experienced both in the past, but had always considered myself a strong and resilient character who dealt with issues appropriately as and when they arose. I then couldn’t help but blame myself for acquiring this illness.

Following a period of improvement, I was discharged from hospital after five weeks.

I have had three further admissions to hospital since my initial discharge. The care I have received has been somewhat inconsistent, and the professionalism of a minority questionable. Based only on my own experience, few general medical practitioners / nurses have heard or understand functional movement disorder. I have felt that I have had to update / inform them on the basis of my own knowledge and experience.

Following seizures I have tended to lose my voice or ability to communicate for a period. During one such incident I had a nurse question the validity of my symptoms, suggesting I was putting them on, and querying my consultant’s diagnosis. With the disorder already little understood and hard to explain, this was demoralising. From a medical stance there has been little that can be done to stop / control my symptoms, albeit my (non epileptic) seizures are currently being controlled by epilepsy medication.

Although not always easy, I have adapted to the physical aspects of the disorder. However, it is the social aspect of the disorder which has been hardest to deal with. I have not worked now in almost seven months. Whilst I yearn to return, I have been assessed as medically unfit at this point to do so.
Prior to becoming unwell I would have been physically very fit and regularly ran and trained at the gym. I am no longer able to do this as I have general physical weakness, and over exertion can be a trigger to being unwell.

Being unable to drive has restricted the things I can do with the children, and resulted in being dependent on others for aspects of everyday life. The children have had to help me a lot with practical household chores, which at times can create a sense of guilt given their young age. However, by far the hardest thing to deal with is the stares from people in the public, when my body or face spasms or contracts into unusual positions. It can cause me to become self- conscious and embarrassed, although I do try to ignore this and view it as their lack of knowledge and understanding.

The unpredictable and inconsistent pattern by which I become unwell is very frustrating. However, support from family and friends, and your website aimed at other sufferers has been invaluable, in dealing with this.

If other medical professionals and the general public understood the disorder better I have no doubt that the social barriers of the illness would be easier to manage.

C

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