Muscle Spasms


donatenew

Last year we asked you to submit questions for a Q+A with Dr Marion. We had so many fantastic questions that we didn’t have time to ask so we have put some more of them to Tom Warner, Professor of Clinical Neurology.

JamesSutcliffe

On the May Bank Holiday of 2008 my life took a sudden, unexpected change. After a normal night out with friends, drinking the usual G & T, I returned home, went to bed as I usually would and slept well. I woke up as I normally would and then I started to feel a little unwell, I put this down to a hangover. I took a small nap, to wake up to something that changed my life in an instant. I found that my speech was badly distorted and slurred; thinking this would pass I carried on as I normally would do. A couple of days later the problem seemed to worsen, so a friend took me to the hospital, where I was admitted straight away. I underwent test after test, to the doctor’s confusion. On paper I was a healthy 24 year old man. Doctors were baffled by what had happened to me and could not finger point a cause or diagnosis. Still almost 6 years on I still have no firm treatment plan or clear cause.

I was put under the care of a neurological specialist, whom I saw every 6 months, just to be prodded and poked at. A year had passed and although I still had my speech problem, I was carrying on my life as I normally would do….then the problem directed itself into my hands. I noticed that my thumb on my left hand was starting to become painful and tight and I found it increasingly hard to use, to the point where it eventually closed fully. Over time a couple of my fingers on both my left and right hands did the same. Working as a plumber by trade I found it increasingly hard to continue doing my job, I no longer plumb as a living. Although I found it very hard going from a drastic wage decrease I found work as labourer. I work with a great team of lads and they help encourage and build my confidence each day.

Finally in the year of 2012 I was diagnosed with dystonia. Finally I had name to this thing that had been ruling my life for so long. I started to read up on dystonia - it is a debilitating disease that can affect your life completely, no matter how minor the symptoms.
My dystonia is treated with botulinum toxin injections and regular hand therapy. The combination helps to relieve some of my symptoms such as pain, stiffness/spasms and range of movement. I am able to grip gym equipment more freely, with a better range of movement; ithe toxin also helps to relieve pain during training.
Always being keen on the gym, I had always been in pretty good shape but I wanted to prove that my goals and dreams were still achievable, although having a disability. For the past two years I have dedicated myself to the gym. I am working hard to try and raise awareness for dystonia and also to help encourage anyone out there who may have disabilities, confidence or self esteem issues or anyone who generally wants to keep in shape.

As with many people with dystonia, James has benefited from physical exercise. However, not all exercise is suitable for all people with dystonia. In particular, some types of weight training can reduce the effectiveness of botulinum toxin. You should therefore always discuss with your consultant before starting.

Whether you have been diagnosed with dystonia yourself, or you know someone who has, our services can make a real difference to you.

Helpline2 copy

Our telephone Helpline is available weekdays from 10am to 4pm to members, non-members and healthcare professionals.

Call 0845 458 6322* or 020 7793 3650 or email support@dystonia.org.uk

*Calls cost 3p per minute plus your phone company's access charge.

Advocacy poss_copy

Our Advocacy Service can make your voice heard if you are being turned down for treatments, benefits or employment support

Forum copy

This is your chance to view or join in discussions about anything to do with living with dystonia

Support Groups_copy

Find out about Support Groups in your area

Coping copy

Find out about self-help techniques, sensory tricks, pain management and complementary medicines to make living with dystonia easier

Benefits and_Rights2_copy Find out about your rights and information on statutory benefits
Parents and_Carers2_copy Information for parents or carers of children living with dystonia
Living with_Dystonia_Events_copy Attend a Living with Dystonia Event in your area to learn more and meet others
Scotland copy Information on support available in Scotland
internet resources_copy Useful information and websites
Blogs copy Find out about other peoples experiences
other resources_copy Other resources - Books etc.
Videos copy Videos about dystonia

The Dystonia Society's forum is moving! [update on 11/01/2018]

Our website is going to be relaunched soon and as part of the relaunch the forum we have on this website is going to close. We are moving our online community to HealthUnlocked. https://healthunlocked.com/dystoniasociety

You will need to create an account over at Health Unlocked as your forum account here will no longer work once we relaunch the website.

We will not be transferring the content of the posts on the current forum. The forum will still be available to read and to post on for the next couple of weeks but we will not be accepting new users during this time.

 

Please click here to enter forum. By clicking you confirm you understand the disclaimer below.


Disclaimer

Messages posted on the dystonia forum only express the views of the author and do not necessarily reflect the views, policy or advice of the Dystonia Society.

The Dystonia Society provides this forum as general information only. It is not intended to provide instruction and you should not rely on any post on this forum to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.

The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of the information in this forum, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from this forum. If you have any health care questions, please consult the relevant medical practitioner.

If you are posting on this forum, please ensure you are aware of the Terms and Conditions.

Sometimes it is helpful to talk to someone who understands: not only about the condition, but how you may be feeling. Our telephone Helpline is available Monday to Friday from 10:00 to 16:00 to both members and non-members and to healthcare professionals.

Helpline number: 0845 458 6322* or 020 7793 3650

*Calls cost 3p per minute plus your phone company's access charge.

To email the Helpline, click here: support@dystonia.org.uk

The Dystonia Society operates a confidentiality policy to ensure information provided to us will be used solely for the purpose for which it is given and be kept confidential within the organisation. However, the Society may disclose information to the appropriate authorities without permission where it has a reasonable belief that there is concern that the health and safety or welfare of an individual is at risk. Click here to see our confidentiality policy. 

This service should not be used for emergencies.

Please note that our Helpline staff are not medically qualified and that the Helpline cannot offer advice about an individual’s treatment or provide any type of diagnosis. The service can however provide support and information on many aspects of dystonia and its management

Although the Helpline is open five days a week, it is a small service and at busy times it will may not be not possible to answer calls in person. If you get an answerphone please leave a message with your name and telephone number - a member of the Helpline team will get back to you when they are able to. 

stay-informed

 

support-services

 

professionals-old

 

parents-carers