Stories | My Site 2614

Functional Neurological Disorder (FND) : a patient's guide

including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms

neurosymptoms.org

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.

Helen - Dissociative Attacks

Helen suffered from attacks for two years before things started to improve for her.

Annette - Dissociative Attacks

Annette describes having dissociative seizures for many years. Her attacks are still ongoing

Claire- 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

Personal Stories

If you cannot read these stories (pdf files) you will need Acrobat Reader.

Functional Movement Disorders (tremor/dystonia/gait/jerky movements)

Seizures

Functional Limb Weakness +/- Pain

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 and stories grouped by main symptom (seizure. movement disorder, limb weakness/pain)

Headache, Dizziness and Health Anxiety.

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

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

Irene - Unusually Severe 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.

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.

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

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

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.

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. Hannah wrote to me 6 years later with a message of hope reflecting on what happened and to let me know that she had made a sustained recovery.

Matthew's Story - Functional Jerks (Myoclonus).

Matthew's brief story explains how even after a long period of symptoms, getting the right diagnosis and explanation can lead to improvement that is sometimes baffling for both patient and physician

Rodneys's story - Functional Gait Disorder. Rodney describes how a heart condition triggered his functional gait disorder. Eventually he received a diagnosis and explanation that enabled him to benefit from physiotherapy

Ian – Headaches, Dizziness and Sensory Symptoms with health anxiety

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

Stories of recovery from Chronic Fatigue Syndrome (CFS/ME)

Many thanks to all the people who have contributed to this page. If you think your story could help someone else then please contact me via the About page.

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.

Ken - Limb Weakness and Dissociative Seizures

Ken has had problems with functional limb weakness superimposed on a childhood neurological problem. He has also had chronic fatigue syndrome and dissociative seizures

Marie - Weakness and Memory Problems

Marie has had recurrent episodes of limb 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.

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

Sarah - Functional Limb 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

Philip - Functional Limb Weakness leading to hospitalisation

Philip had experienced some other medical problems including cancer and was in hospital because he was so disabled by functional limb weakness. His wife describes through a series of emails finding out and coming to terms with the diagnosis. She describes improvement over time

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.

Cherry's story - Functional Limb Weakness /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

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

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

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.

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.

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

George's Story - Functional limb weakness and speech problems with chronic pain. George had an accident at work when he hit his head. This led to a worsening of a chronic pain problem and then FND with walking and speech problems. He explains how it took him a long time to get his head round the diagnosis but how eventually he did and is now making slow progress.

Dr Henrik Vogt is a Norwegian general practitioner with a research interest in functional disorders.

CFS/ME describes persistent and disabling fatigue, usually with many other symptoms such as poor concentration. There are many online personal stories testifying to how horrendous life with CFS/ME can be.

But patients faced with CFS/ME have often found it hard to find stories of recovery from which they might learn.

Dr Vogts website Recovery Norway - www.recoverynorway.org - aims to publishing stories of improvement which may be helfpul to some readers of this website to try to redress the balance.