Thursday, October 09, 2014

Cervical Dystonia

In March, I started having symptoms of what turned out to be a neurological movement disorder called cervical dystonia.

What is cervical dystonia? (I wondered this too)

Dystonias are involuntary muscle spasms. Your brain sends the wrong message to a muscle telling it to contract when you don't really want it to. These can occur in all kinds of different ways. For example writer's cramp, golfer's 'yips' and dysphonia (muscle spasms of the vocal chords) are all dystonias. Eye twitches are also dystonias. You can have a generalized dystonia, where spasms happen all over the body, or a focal dystonia that only occurs in one area (like eye twitch). The most common type of dystonia is of the neck (called cervical dystonia). This is the type that I have.



Scientists really don't understand what causes dystonia. There is a type of generalized dystonia that children get that has been studied better than most, and all they really know about that one is the gene that is involved. In other types of dystonias, it seems there is a problem with neurotransmitters that are important for motor control (e.g. dopamine). But, many different genetic mutations can lead to dystonia and only about 25% of these are even known - so there is still a lot that we don't know. What does seem clear is that in people with dystonia, there is a disconnection between the brain and the nerves in the muscles that the brain is trying to control. What is really weird about dystonia is that in some patients the symptoms can go away (about 10-20%), and the patient can go into remission - but most patients that go into remission will eventually 'relapse' and have the dystonia reoccur (and not always in the same place or same way). This suggests that sometimes the brain or body can find a way around the issue that causes the dystonia, at least temporarily. Dystonias are not typically progressive (although they have been known to 'spread' from one site to another in some patients) and have no effect on cognitive function or lifespan.

Even though it is the third most common movement disorder (behind Parkinson's and essential tremor), almost no one has heard of dystonia. This is too bad because that means it often gets misdiagnosed, and misdiagnosing a dystonia can lead to a LOT of unnecessary emotional and physical trauma. People have been told they're crazy or lazy, they have had surgery that actually made the problems worse, they have spent thousands upon thousands of dollars seeking out medical help from the wrong specialists (yes, even doctors often don't recognize dystonias!), and on and on. The average person with dystonia goes to 7 doctors which takes over a year before they get the correct diagnosis. I had to go to only 4, and was diagnosed in about 2 months.

Like many chronic illnesses, dystonias can manifest in as many ways as people that have them. Cervical dystonia is no exception. Cervical dystonia is when muscles in your neck contract and your head is pulled to one side, up or down, or some combination of these. Every person is different in the direction their head is turned and how their symptoms appear. It can be a constant pull or a pulling-jerk or happen with or without a tremor. Some people have just a tremor and no pull. It can also be a VERY obvious deviation of the head (or tremor, or both) or it can be totally hidden (just something the patient feels). It can be off and on, or constant. Mine is a constant pull with some jerking (no tremor), with a deviation of the head that is 10 degree tilted to the left (ear to shoulder), 10 degree turned to the right and a moderate 'retrocollis' (looking up). In the next post I'll tell the story of how my symptoms started, my diagnosis and treatment so far.



The muscle contractions caused by dystonias can be very, very severe. Even if the symptoms aren't visible to others, it can cause an immense amount of pain and suffering. It can be exhausting, horrifically damaging to the body (after just 3 months untreated, permanent damage can occur to the spine), causing pinched nerves, broken teeth and bones, herniated discs, misalignments of the jaw and asymmetries of the face and body. Below is a before-dystonia and after-dystonia (before treatment) picture of a person named Rogers Hartmann who developed cervical dystonia in her 30s (like me) which caused her head to pull so hard her body was bent completely over. Rogers, like many of us dystonias, lost a lot of weight after her symptoms started - this is common due to all the calories burned by the muscles spasms (and difficulty with eating). When untreated, I do not look quite this bad, but my body does get pulled something like the picture shown. As you can imagine, it makes it really difficult and tiring to do simple tasks like getting a drink of water, brushing your hair and showering.



Dystonias are treatable but not curable. Focal dystonias can be treated with Botox, which temporarily blocks the nerve from sending constant signals to the spasming muscles. However Botox treatment can be tricky because the dose and location of injections must be optimized - it takes an experienced doctor to get it right and often several attempts before it's really effective. And some dystonias are better treated with Botox than others. There are some oral medications that help, but these often have side effects and it can take a while to find the best one for each patient. Other options are denervation surgery, where the nerves are cut (this is permanent, but when it helps it can be really helpful). The most recent, and maybe most promising treatment is deep brain stimulation, where electrodes are put into the brain through surgery and send pulses to the parts of the brain that are malfunctioning (using a pace-maker type device). It can take up to a year to optimize the frequency and strength of the pulses to minimize symptoms, and there are still some issues with the surgery itself and maintenance of the system, but it does often help especially in those cases where Botox and other methods fail. What we really need to improve treatment is a better understanding of the cause so that we could target and 'fix' the root of the problem, but unfortunately we are still a long ways from this. But the past 20 years has been revolutionary in terms of treatment options and there is a lot of hope that we will continue to improve those treatments and develop new ones, and find the right thing for each patient faster so all dystonians have a better chance at a good quality life. So if you are reading this and you have cervical dystonia or any kind of dystonia please stay positive and keep working to find something that helps you, because there are a lot of things you can try and a lot of resources on how to be an advocate for yourself to find the best outcome.

19 comments:

Sophie Lewis said...

As a sign of gratitude for how my husband was saved from cervical dystonia/spasmodic torticollis, i decided to reach out to those still suffering from this.
My husband was diagnosed of cervical dystonia/spasmodic torticollis in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have Joint pain , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cervical dystonia/spasmodic torticollis . I never imagined cervical dystonia/spasmodic torticollis has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. cervical dystonia/spasmodic torticollis has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

PAUL said...

ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

JESSICA said...

ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

kate said...

Dear FRIENDS,
now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
And live with my boyfriend in Belgium, but I am UK. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

Reply

Shelley Michele said...

I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

devansh said...

Thanks to Dr Williams I am so mush happy today, I have been suffering from dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can email him on drwilliams098675@gmail.com for advice and for his product.

Leonardo DiCaprio said...

Thanks for your good recommendation to Dr Williams,am now also free from cervical dystonia after one month of using his medicine.

karen said...

I am Karen from Canada, I once suffered from cervical dystonia,for more than 30 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had jerky head movements and muscles contract ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Jessica on how her daughter was been cured from cervical dystonia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again for more information you can email him on drwilliams098675@gmail.com for help

PAUL said...

ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

Sophie Lewis said...

As a sign of gratitude for how my son was saved from dystonia , i decided to reach out to those still suffering from this.
My son suffered dystonia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from dystonia and so many other with similar body problem, and they left the contact of the doctor who had the herbal cure to dystonia . I never imagined dystonia has a cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months he was fully okay even up till this moment he is so full of life. dystonia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

JESSICA said...

ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

karen said...

I am Karen from Canada, I once suffered from cervical dystonia,for more than 30 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had jerky head movements and muscles contract ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Jessica on how her daughter was been cured from cervical dystonia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again for more information you can email him on drwilliams098675@gmail.com for help .

Shelley Michele said...

I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

JESSICA said...

ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

Shelley Michele said...

I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

Leonardo DiCaprio said...

I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on blog-site so many people suffering from different kind of disease including dystonia thanking him about his good work. I also have dystonia. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my dystonia status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for me,after taking Dr Williams medicine i was completely free from  cervical dystonia  within one month of usage,  I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good  person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help 

hussain said...

dr williams is fraud he took from me
£260/- for tinitus medicines but never send me medicines
i send him money through money gram and he received money in UAE i have documentry evidences
i am in london uk my email (husein005@hotmail.com)
i am tinitus sufferer pls pls for God sake be carefull this this address (drwilliams098675@gmail.com) on some pages
i seen he comes with 098765

Shivam mittal said...

Very informative blog you shared. keep sharing such blogs with us.
Dystonia Treatment in UAE

Moma garage said...

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Drakhigbeherbalhome5@gmail.com
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