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Jeannette's Story

Jeannette has had relapsing symptoms of limb weakness with back pain and fatigue. She has found exercise, a healthy diet and ‘understanding the importance of Body and Mind’ useful in managing her symptoms.

I was diagnosed in July 2014 with a Functional Neurological Disorder, and admitted to hospital with paralysis down my left side. I was unable to walk, difficulty with my speech and severe pain in my back. Yet this was not a new experience for me, having health problems, physically and psychologically, all my life. This was just another relapse of my condition, yet I was devastated because I knew I had a long road of recovery ahead. In the past I have had many diagnosis such as M.E, CFS, Fibromyalgia, IBS, Migraine, epilepsy, depression, anxiety and non-specific urinary tract infections, to name but a few. My own personal experience with health professions have not always been a positive one, using names such as neurotic, hysterical, highly strung, hypochondriac, and psychologically unstable. I have often felt on my own with this disorder, and did not think I was going to be treated any different this time.

I am so glad to say I was wrong. What was the new experience for me, was how I was diagnosed and treated by my consultant. He was knowledgeable in Functional Neurological disorders due to recent work by neurologist in the UK and elsewhere, and was able to diagnose me very quickly, after applying the ‘Hoover test’. I was treated with understanding and kindness from my consultant and he readily supplied me with information on FND/Conversion and the neurosymptoms.org website. When I was discharged from hospital I received support from the immediate stroke team, who supported me and encouraged me on my road to recovery.

It has taken a full year for my symptoms to calm down, at the beginning of a relapse all the symptoms are aggressive. I have counted as many as a hundred symptoms in a chronic attack. I still have mobility problems, my speech, hearing and eyesight are poor, my long term memory is impaired and I suffer daily from spasms and twitches as well as permanent weakness. I still take anti-epileptic tablets as well as other prescribed drugs, but still unsure if I have epilepsy due to the many conflicting opinions from tests.

My own personal way of dealing with this condition is varied, but I always begin with a good look at my diet to see if I can change anything to help me. I usually exclude cakes, sweets, foods with MSG, caffeine and cheese for a couple of weeks, sticking to a diet of fruit, veg and white meat or fish. I find that drinking plenty of water always helps. The more exercise I can do the better I feel, at the moment I am concentrating on my walking.

The most important thing for me to be able to live with this disorder is a firm positive way of thinking. I look at this condition in a holistic way, understanding the importance of both Body and Mind. I firmly believe in relaxation therapy, meditation or just plain old ‘me time’. I use CBT methods to control some of the symptoms and believe by understanding myself has helped me to relieve certain symptoms. I try not to panic when I am having a FND attack, finding it only exacerbates the symptoms. Having a hobby or focus has helped, I enjoy arts and crafts and this has helped tremendously for movement in my hands.

Even though I have had this condition for a long time, what has made everything more positive for me this time is the diagnosis. I believe that knowledge and education amongst medical staff is vital to the quick diagnosis of FND/Conversion.

Jeanette