Personal Stories

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

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.

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

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

Click on the picture below to download it