The following patients have written their own stories for this website and have kindly agreed to let them appear here in the hope that it can help others understand their own symptoms. Their details have been anonymised.
1 - Ian – Headaches, Dizziness and Sensory Symptoms
Ian’s two letters speak for themselves. Click on the buttons below to read them
He wrote the first at a time when he was becoming really desperate because of escalating neurological symptoms.
He had seen two neurologists, had frequent consultations with his GP as well as visits to accident and emergency and his symptoms were getting worse. He felt too unwell to work for many months
He wrote the second letter after receiving a different explanation for his symptoms which helped him to understand them.
He is now back at work and largely symptom free
2- Anna - Tremor, Jerks and Difficulty Walking
Anna woke up one morning with a tremor (shake) of her head. She became unsteady on her feet and developed problems walking.
Fortunately, she was able to find a way to regain control of her symptoms relatively quickly
3 - Mary - Blackouts / Dissociative Attacks
Mary suffered from blackouts for many years before finally learning some techniques to get control of them. Like many patients with dissociative attacks, Mary's blackouts were initially wrongly diagnosed as something else, in her case, they were put down to faints.
4 - Helen - Blackouts / Dissociative Attacks
Helen suffered from attacks for two years before things started to improve for her.
5 - Debbie- Arm Weakness and Pain
Debbie describes recurrent episodes of functional arm weakness and pain as well as the difficulty she has had in having her symptoms taken seriously.
6 - Ken - Weakness and Dissociative Seizures
Ken has had problems with functional weakness superimposed on a childhood neurological problem. He has also had chronic fatigue syndrome and dissociative seizures
7 - Marie - Weakness and Memory Problems
Marie has had recurrent episodes of weakness along with memory symptoms for many years. She describes thet frustration of multiple neurological referrals in her story. she subsequently wrote in on the feedback page (19th Dec 2010) with a follow up post.
8 - Annette - Dissociative Seizures
Annette describes having dissociative seizures for many years. Her attacks are still ongoing.
9 - William - Arm pain (complex regional pain)
William was troubled by persistent arm pain. With a diagnosis and the correct painkillers, he was able to successfully carry out the physiotherapy that helped him to improve
10. Sarah - Functional Weakness and pain and other medical problems
Sarah describes quite a common story. She had a medical problem, in this case with her kidneys, which triggered functional symptoms including left sided weakness and pain. She is still struggling with her symptoms some years later
11. Irene - Functional Movement Disorder (Fixed Dystonia) , Weakness, Pain and Fatigue
Irene describes severely disabling functional neurological symptoms, so severe that she is bedbound. Whilst many functional symptoms are challenging to improve from, and fixed dystonia particularly so, please bear in mind that it is extremely unusual for functional symptoms to be this severe.
Irene describes a common experience of feeling disbelieved by doctors and how, at least knowing what is wrong with her has been of some benefit even though her symptoms have not improved.
11. Philip - Functional Weakness leading to hospitalisation
Philip had experienced some other medical problems including cancer and was in hospital because he was so disabled by functional weakness.
His wife describes through a series of emails finding out and coming to terms with the diagnosis. She describes improvement over time.
12. Gayle - Functional movement disorder / weakness
Gayle describes going from being a healthy active person to devloping functional movement disorder (fixed dystonia) with considerable disability and episodic weakness associated with dissociation. She describes going through the process of being 'in the dark' about what was wrong and now learning to work round her problems (to some extent) now that she has a better understanding of her symptoms
13. Claire's story - Dissociative (non-epileptic) attacks
Claire sent her story for the feedback page. She describes overcoming frequent attacks with the help of her family and a psychiatrist. She is now free of the attacks
13. Vic's story - Pain followed by limb weakness and other symptoms
Vic describes how she developed pain and then progressive weakness combined with multiple symptoms. She describes how she has been gradually improving with the help of physiotherapy since receiving the correct diagnosis.
14. Stuart's story - Functional tremor and leg weakness with improvement following diagnosis
Stuart describes progressive problems with functional tremor which eventually improved following a greater understanding of the nature of the diagnosis combined with communication between his neurologist and employer.
15. Cherry's story - functional weakness and sensory symptoms, cognitive symptoms, speech, double vision
Cherry describes longstanding symptoms with associated disability. She describes some renewed optimisim now she feels she has a better undertstanding of the problem along with access to physical rehabilitation
16. Hazel's Story - Complex regional pain syndrome for 7 years with complete recovery
Hazel's story shows that it is possible to recover from complex regional pain syndrome. Hazel describes how understanding that the problem was coming from her brain and nervous system, rather than damage to her hand, along with the right physiotherapy and lots of determination were the key ingredients to her recovery
17. Loretta's Story - Functional Limb weakness and then multiple symptoms including pain, depression and bladder symptoms
Loretta describes worsening symptoms of leg weakness and numbness over an 18 month period. She describes difficulty finding health professionals who could offer understanding or hope. More recently she has developed bladder symptoms
18. Steve's story - Fatigue followed by multiple relapsing symptoms including neck weakness, attacks and slurred speech
Steve describes living with symptoms for many years that have varied in intensity. He is now improving slowly with a more careful approach to physical activity.
19. Becky's story - Functional limb weakness worsening with tremor and episodes of paralysis then improving with rehabilitation
Becky's story shows that even after many years with worsening symptoms it is possible to find a way to find hope and gain improvement with the right rehabilitation. With Becky's permission I have left on the name of our team in Edinburgh who were able to help her.
20. Charmaine's story - Functional Movement Disorder with severe 'convulsive' episodes
Charmaine describes developing a functional movement disorder which sometimes escalated in to severe episodes with blackouts. She also had severe fatigue. She describes some things that she has found that have helped including distraction and relaxation techniques. Things are now improving.
21. Marie's story - Functional Gait Disorder with attacks
Marie is from the Czech Republic. She had problems with gait disorder, fatigue and attacks of abnormal movements. She has done well with rehabilitation and physiotherapy. You can read her story below. Marie also sent in a video of her gait problems which you can see here and on the functional gait disorder page
22. Steve's story - Functional Movement Disorder improved with rehabilitation
Steve describes developing 'myoclonus' which means jerky movements of the body combined with progressive disability that led him in to a wheelchair. He describes how he learned to gain control of his movements and walking again with the aid of physiotherapy and a team approach from health professionals familiar with functional disorders
23. Jeannette's Story - Functional Limb Weakness, Back Pain, Speech Difficulty and Attacks
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
23. Hannah's Story - Functional Dystonia of neck and shoulder with health anxiety
Hannah describes how she developed spasms in her neck and shoulder leading to a diagnosis of functional dystonia. She describes her battle with health anxiety and eventual improvement once she gained control of the situation