ABOUT

Introduction:

Welcome to the Cure for Dystonia blog. I am 24 years old, living in the UK with a full time job and was sadly diagnosed with Generalised Dystonia October 2013. However, I was fortunate enough to find a cure and by January 2014 I was able to return home to the UK having fully recovered. Through this blog I aim to provide and share  as much information as possible with other Dystonia patients. Here is a guide to get the most out of this blog:

Blog Navigation:

  • My story – two subsections:  my story and diary during treatment. ‘My Story’ describes the development of TMD and Dystonia and the struggles I had experienced up until the treatments. ‘Diary during treatment’ then follows but I suggest that you first have a read of the Framework and Treatment sections to aid your understanding. It is still a work in progress but I will be uploading regularly so readers can find out about my ups and downs up until the end of my treatment process. I appreciate that sequencing may be a problem for some readers (i.e. the first post seen is the latest post) but I recommend reading from the earliest date which can be done by scrolling down to the end of the page and navigating to the oldest post.
  • Framework – explains concepts and theories behind FCST (Functional Cerebrospinal Therapy). It is recommended to read the subsections in chronological order.
  • Treatment – explains all the available treatments at Dr Lee’s private medical practice (also known as FCST clinic)
  • Pigeon Hole – miscellaneous information, tips and resources
  • Clinical Cases – videos of successful treatments at FCST clinic

Brief history about myself:

  • April 2012 – Discovery of TMD (self-diagnosis)
  • March 2013 – Medical Diagnosis of TMD
  • April 2013 – September 2013 – Dental Treatment for TMD
  • June 2013 – Symptoms of Generalised Dystonia start
  • October 2013 – Diagnosed with Generalised Dystonia and dental treatment discontinued
  • October 2013 – FCST (Functional Cerebrospinal Therapy) started
  • January 2014 – Full recovery from Generalised Dystonia and relief of TMD symptoms

44 thoughts on “ABOUT”

  1. Thank you very much. My name. Is Ruslan. And I take very much power frome your site, now i’M I N CLINIC OF DR LEE. With dystonia and torticollis I feel quite like you felt. I am here for 3 weeks. Dr lee is a greate Man I feel my tremor getting less but I have some problem with back. Too difficult keep it sraitgh. BUT SEVERAL DAYS BEFORE DR LEE SHOWD ME YOU STORY AND YOUR SITE. ….. And I begin walk idealfully… I believe in myself… Everybody aploud mee it was not so long jus 20 minites but I was happy! I writing it with tears in my ears. I undestand Tha can be helthfull really Healthull! 14march 2014 I am from Russia

  2. Hi Ruslan,

    Thank you. I feel so encouraged that my blog can help others. I found the first 4 weeks the hardest because it was the time when I went through most emotional state and I found the treatment physically demanding. But I can assure you, once you go over enough hurdles, it becomes easier so believe in yourself and keep going. Make your body follow your mind – you can do this by thinking positively and staying strong.
    I’ll keep working hard to finish the diary – I really hope it helps. Thanks again.

    Best wishes

    S.

  3. Hi,

    I am also from the UK (near London).

    I’ve had Spasmodic Torticollis since September 2012 and although Botox is helping a little each day is still painful and a struggle. I’m looking forward to reading your blog over the next couple of days.

    I am having alternative treatment through a TMJ specialist so it might very well be the exact treatment but I will let you know after I have had a good read.

    Thanks for sharing!x

    1. Hi Pink Butterfly,

      Thanks for reading my blog. I’m sorry to hear that you are suffering from pain. Dystonia is really a horrible disorder to have and it is not easy living with it. I hope information on this blog is helpful and if you have any questions let me know.

      I know what you must be going through and I can only encourage you to stay positive.

      Take care,

      S. x

  4. This website is just fantastic. Well done with all the work you have put in to it. I treat TMD and Dystonia here in the UK and agree with everything you have had done and your information. Keep up the good work

    1. Thank you very much Dr Hedger. Your encouragement is very valuable to me. It is a shame that not many people recognize the importance of TMJ and its impact on our body. At the same time however, I am so happy that there are doctors who have not neglected the fundamental concept of medicine: looking at the body as a whole.

      I am not from a medical background but while I was there I was luckily given an opportunity to attend professional courses provided only to doctors. I only put up the basic information that I had gained from them on this blog but the amount and quality of information they share is amazing. It was also interesting to see that at least 1/3 of attendees were dentists with years of experience who had reached the limit in finding an effective treatment for TMD with long lasting effect. The treatment is now widely applied amongst dentists and the results are without doubt very positive. There has been a great achievement in integrating doctors from different fields including neurologists, dentists, chiropractors, Korean medicine doctors, otolaryngologists, gastroenterologist and other doctors all working and learning in unity because they have recognized what they have been missing.

      I really hope that one day the effectiveness of cerebrospinal functional medicine and therapy are widely recognized. For that reason, I am so grateful for your acknowledgement and it certainly drives me to keep up the work. Thank you.

    2. I was diagnosed with dystonia. i have shoulder and neck pain i also have a lot of dental work done and had a broken jaw 20 years ago. Do you think i should have a tmd done please can you help me Thank you

  5. Hi!

    I would like to agree with Dr Andre Hedger’s and Dr Helen Jones’s comments. I told them both about your site as I know the information can help many others.

    Thank you so much for creating this site to help people like me, I am looking forward to learning as much as I can from you.

    Speak soon 🙂 x

  6. Hi!

    Can you tell me what exercises you was given to do?

    I do approximately 45 minutes of stretching and strengthening exercises per day but am very interested to find out what exercises you was advised to do, especially if they are more effective than the exercises I do and take less time.

    Thanks x

    1. Hi Pink Butterfly,

      Thank you very much for recognising the value in the information that I share. I also appreciate your effort in spreading the information. I hope you can benefit from this blog too. The exercises are very simple and only take 2 minutes to do per set – it is recommended to perform one set every hour (8 or 9 sets a day). The exercises aim to use the muscles equally at every direction whilst TMJ is balanced. In essence, the whole exercise is effective in aligning TMJ and spine from top to bottom. However, it may not be as useful if your TMJ is not balanced because the abnormal contractions of the muscles are not resolved. Thus, Dr Lee recommends his patients to do these exercises with a standard device on (TBA or OBA depending on occlusion of the individual).

      However, it might be worth trying the exercises and seeing if it helps – it can still resolve some of the tension that you have. I have put up a post on this and the video shows the 4 exercises. https://curefordystonia.wordpress.com/2014/02/05/body-exercises/?preview=true&preview_id=468&preview_nonce=e046054f15&post_format=standard

      There are also other self-therapies that may be useful in relieving some of the symptoms too such as breathing exercises and meditating.
      Let me know if you have any more questions. Always happy to help.

      S. x

      1. Thank you so much S (shall I call you S?)

        I will have a look at the link, think I better speak to Dr Andre Hedger regarding what you said about doing the exercises when the TMJ joint is in balance (sorry not sure of your exact words as on phone so can not see your post) as I am receiving treatment from him.

        I am a member of a Dystonia forum and speak to many people on there regularly who have Dystonia/Spasmodic Torticollis, they know I’ve started treatment to correct my TMJ problems and they have seen videos online showing this treatment but as its all very new and expensive they are sceptical….so I’m the human lab rat 🙂 I can’t wait for my treatment to start working effectively enough for me to share this with them all and hopefully encourage them to also have this treatment so they can also get their life’s back 🙂

        Thanks for sharing the link for the exercises, I will email my dr and ask him to view the link to see if he thinks I should stop the exercises I’m currently doing and start these exercises.

        Speak soon and thanks again 🙂 x

  7. My daughter recently got diagnosed with foot Dystonia. Her foot is turned inwards at almost right angle now. just one is affected. She is mid thirties and was previously healthy.
    She is in constant pain although she is taking her meds, amyltriptyline? co-codamol, levadopa…she has had so many I am unsure what she takes at present..her husband is great and helps her so much with the children and daily life. She has a splint on her leg to keep her foot straight but when she takes it off her foot goes back inwards. She is not receiving the care I think she needs. She was diagnosed at Walton last November and isn’t seeing her consultant again till October this year.
    She was admitted to hospital last week as she started having spasms in her sleep which one doctor told us are possibly her brains way of dealing with the pain, her own consultant disagreed but discharged her with no diagnosis for the spasms.
    I would be grateful to know what our next step could be…we don’t like to dispute the medical guys but surely just being told to ring an ambulance if it happens again and to increase her pain meds is not enough?

    1. I strongly endorse keeping up the hydration with water. There was a great little study done in London showing how increasing water intake significantly improved low back pain. For the lady who has the daughter with dystonia in the foot would do well to get the condition of her TMJ checked and the foot arches and pelvic alignment and Sacro-Ileac joint
      ANDRE

  8. Hi Sue,

    Hope your enjoying life without Dystonia 🙂

    Just to let you know that I have posted the link to your website onto the Dystonia forum I am a member off so a few others are now ready all about your journey.

    Can I ask you (sorry if you have already posted this) did you have to follow a special diet?

    Thanks x

  9. Thanks Pink Butterfly. Re. diet, although I wasn’t strict with it I tried to follow a brown rice diet, reduce fat intake and just generally eat healthier food (salads, protein such as chicken breasts, lower intake of carbs & fats and eating regularly). Also, I drank lots of water to keep myself hydrated. It certainly helped to reduce symptoms such as chronic fatigue, indigestion, depression and anxiety, which I found was effective in reducing muscle spasm to a certain extent so I think diet is also an important aspect. Now I’m back to normal, I am becoming lazy and find myself returning to my old eating habits but I still try and stick to eating healthily if I can. Sorry I couldn’t be of more help, I hope you can benefit from a healthy diet too though.

    Sue

  10. Recently diagnosed with cervical dystonia also affecting shoulder down to my waist and up into bottom third of my skull. Can’t get into dystonia neurologist until August and so glad I found your blog first. Thank you!

    1. Hi Terry,

      Thank you for reading this blog. I know what it’s like to live with Dystonia and it certainly is not easy. But I hope you stay positive and hope your treatment goes well. Let me know if there is anything I can do to help.

      Sue

  11. When I found this website it gives me hope. My daughter has been suffering from dystonia since she was 6 years old. Walking is hard and painful for her. She had treatment from oral medication to botox. She also had Deep Brain stimulation, but it didn’t really help. This TMJ treatment is definitely something that we will try. Thank you very much for creating this website to inform others who need it.

  12. Hi Miranda, sorry to hear that your daughter is suffering. I hope the blog has been useful and find a treatment that helps her to recover soon.

    I’m not sure whether you have come across this subject already, but there are some patients who have benefited significantly from having their amalgam (dental fillings) removed, which was causing the toxic metal (mercury) to affect the nerve system.

    There are dentists that suggest that the mercury levels are safe in amalgam fillings, which is probably true for many people but it may be a contributing factor that is triggering the muscle spasm for some Dystonia patients. So I think it might be worth checking out.

    Here are some useful links:

    http://www.toxicmetals.info/case_main.htm

    http://drhyman.com/blog/2010/05/20/mercury-get-this-poison-out-of-your-body/

    http://www.eytonsearth.org/mercury-toxicity-bentonite-clay.php

    Good luck x

    1. Thank you so much for sharing the information. I will definitely try to find out if my daughter’s dystonia is affected by her dental filling. Once again thank you for your willing to help.

  13. The work of Dr Lee sounds wonderful and I am glad you are cured of your problems. I have severe tmj and would like to know whether there is anyone in London UK who does similar work to Dr Lee. Thank you

    1. If you look up the website for the British Society for CranioMandibular Disorders (www.jawache.com) you will find a list of Practitioners who have a special interest in TMD and some also in Dystonia.
      Dr Andre Hedger

  14. Dear Ed
    I would look up the American Academy of Craniofacial Pain to see who is doing this kind of work in the USA. Dystonia and TMD are nearly always linked so get that checked out
    Dr Andre Hedger

  15. I was recently diagnosed with cervical dystonia and really looking for relief but i live in the US do they have any kind of treatments like Functional Cerebrospinal Therapy here?

  16. Hi,
    Thank you for the great blog.
    I have developed dystonia (total colapse and ritation of the balance of my spine and jaw) in a matter of 24 hours after a negligent dental treatment in May 2013.
    The condition has reduced my ability to work and had to stop doing sports. I have visited some of the best dentists in Spain and the could not help.
    I have a set of 2 upper and lower invisible reatiners that were realized 19 years ago when I finished an orthodontic treatment. When I sleep wearing them, all symptoms go in remission and eventually disappear. I cannot use them anymore as they are 10 years old and falling apart.
    I need help. I live I Spain but am willing to travel to get a good treatment.
    Could you recommend anybody who can help me? Ideally in Milan (Italy) or Madrid (Spain). London could also be a more expensive but viable option.
    As I told you, I need help and fast as this condition is affecting my ability to work and provide for my family.
    Thank you very much in advance.
    Marcello

  17. Hello.. My Brother has dystonia but wasnt yet sure what kind of case he has. Dr’s, my question is: do you have any colleague that works for you based in the Philippines? pls advise.. Thanks you.

  18. Thank you all for your blogs and the very positive outcomes and there is hope. I too was diagnosed with dystonia last week and going to try alternative medicine, diet and exercise and visit my dentist as i have so much dental work done that i feel my jaws are out of alignment. and hopefully this should be a road to recovery.god bless you

  19. i jar partake on top and bottom, I am always clenching my teeth so much that my beautiful teeth I got last year look so worn you’d think I’d had them for years, my dentist knows about my Dystonia but never mentioned tmj, should I find another dentist?

  20. Hi

    Am so glad to find your post. My 13 year old niece has been suffering from generalized dystonia affecting activities such as chewing, walking, writing, speech etc. She has been showing signs of dystonia for the last 5 years and has got progressively worse. The family is based in India and have been advised by doctors to go for Deep Brain Simulation surgery. We wanted to enquire if we have any other option available before going for a complicated brain surgery for such a small girl.

    Do you know if Dr Lee can help in this situation. It would be great if you could provide an email with which we can explain her situation and maybe get his opinion.

    Thanks,
    Ranjini Muralidharan

    1. Hi Ranjini,

      Sorry to hear about your niece, it must be very difficult for her and the family to cope.

      FCST could be effective for her but like you said it would be better to contact Dr Lee to get his advice. His email address is yjleejun@naver.com

      I hope you find it useful.

      Thanks for reading the blog and let me know if there is anything else I can do to help.

      S

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My story on overcoming Dystonia