Jenny was diagnosed as a child, receiving regular psychiatry and psychology appointments aged 18 -19. Then she was signed off because she was no longer a child. The symptoms were restricted to shaking, temporary paralysis of any limb and loss of sight. Despite everything she was going through, including being told by college that she was a health and safety risk, she succeeded in gaining 4 A levels and completed an apprenticeship in working with children. She passed her driving test and has a job she loves, together with a very supportive partner.
She is now 21 and has taken a turn for the worse. Since Christmas, she hits her head, her limbs thrash about, she loses the ability to talk… the list goes on; she requires nearly 24 hr supervision to prevent her hurting herself.
Having moved home, we have a GP surgery that has struggled to maintain a consistent service and has no knowledge of the condition. We have been referred through the local Mental Health services, who just say that it is not a mental health condition and go back to the GP, we have gone to A&E by ambulance, where she was given a dose of morphine and sent home, the consultant neurologist refused to see her as she already has a diagnosis.
After trying to get a private appointment but again get told it is not their area. Jenny has contemplated suicide. She had a minor breakthrough, with a referral to St George’s Hospital in London to a FMD clinic – though she had to wait until this May to arrive; Jenny hasn’t stopped moving, shaking and rocking, even in her sleep, for 6 weeks now and was in danger of losing her job as she wasn’t able to work. With her mother Jo due to start a new job following 9months of unemployment, she was scared to leave her alone for fear of what might happen.
Since then, Jenny has given the go ahead for me to use her story.
She is still here, dealing daily with ever-changing symptoms – loss of hearing, strange walking habits, loss of speech, head banging….the list goes on. Her GP has now signed her off from work indefinitely; this has hit her very hard as she loved her job and valued her independence.
She had her visit to St Georges; it was fantastic to have someone listen and understand! Leaving, knowing there is treatment available that could return Jenny to her former life, including being able to drive!
Life also develops in other ways – Jenny has got engaged to a fantastic young man, who has seen her at her absolute worst and is still here! Wedding plans are underway, including looking at wedding dresses that will not restrict her abnormal movements, but will also help to disguise them.
She may still have ever changing daily struggles, but this is still a success story.
I wish every success and happiness for you Jenny and your partner in your future, stay strong!