Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

What is Dystonia?

Dystonia is a neurological condition that causes involuntary muscle spasms. Dystonia can affect anyone at any age, and each Dystonia is different. These spasms can affect any part of the body, causing abnormal movements/postures. Dystonia is often debilitating and painful, which in turn impacts many aspects of life. It is estimated that around 70,000 people in the UK are suffering from dystonia. However this figure is not exact as often Dystonia takes a very long time to be diagnosed and is often misdiagnosed.

For more information on Dystonia please click on the links listed below.

1) http://www.dystonia.org.uk/

2)http://www.dystonia-foundation.org/

3)http://www.nhs.uk/conditions/Dystonia/Pages/Introduction.aspx

4)http://www.bbc.co.uk/health/physical_health/conditions/dystonia.shtml

 

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Comments on: "What is Dystonia?" (7)

  1. i gave botox 7 years and about died. what dr. did u see

  2. Botox can make U worse-I guess u just have to live with all of it, Drs in San Antonio told me Botox could frezze my vocal cords so Id no longer be able to talk!

    • Cheryl DIllon said:

      This is what I fear most; side effects. That’s how I developed dystonia in the first place, being on medications! Why isn’t more research being done? Because no one famous has this disorder. I wouldn’t wish this on anyone, don’t get me wrong, but it would help if someone famous got behind this, like Parkinsons has MJ Fox.

  3. George said:

    My two cents: I stumbled upon your website looking for something else, and couldn´t help myself reading the article … I have a comment: my wife had many of the symptoms generically described here: pain in the joints, body spasms ( while in a crisis) and some others like, nevralgic pains, like electric shock pain, stabbing, even punch-like pains and in addition, swollen ganglia across the body in multiple places. She was ” diagnosed” with Fibromialgia, which is a kind of a “black hole” where physicians throw the patient when they have no clue what the problem is. Turned out she got 95 % better and lives now a normal life now, after she took a food allergy test and found out she is strongly allergic to GLUTEN, EGGS and MILK PROTEIN . That information changed her life and she is back to a normal (95%). Most doctors you come across while researching for a problem like this will give you drugs like Lyrica and tell you to go home and suffer, and some will call you Doctor Google, mocking at the information you bring to the table -indeed, both situations happened to us. Funny, sometimes I see on TV , some top experts telling the truth about ” you are what you eat” , but that does not happen, when you go see your average physician, doesn´t matter what expertise. If you bring food concerns to the conversation it will most likely be dismissed, as unimportant, or irrelevant.

    So my suggestion is (1) take a food allergy test and (2) stop eating what affects you.

    The mechanism for food allergy is this: spasms and nevralgic pains happen because of the constant inflammation your body creates to fight what the immune system believes to be an infection but it is really a food substance you are allergic to . The constant, and often undetectable inflammation condition is the root cause to all the suffering including spams and pains, and swollen ganglia

    Chronic Lyme disease for instance triggers body inflammation ( as a biological defense mechanism) as much as food allergy does. Both are seen as intruders by the immune system. You can very easily be diagnosed wrongfully and be prescribed drugs that will spiral you down, phisically and psycologically , and will have no effect on the root cause of a food allergy . And you physician couldn´t care less …

    Good Luck
    George

    • Hi George, thanks for your comment. I have had allergy testing in recent years, and now avoid over 20 foods! Whilst it improved some of my symptoms the rest are due to other things such as EDS & Dystonia.
      Best Wishes,

  4. George said:

    If you are still eating GLUTEN, try to completely stop it for a month, and check the results. This was the villain number 1, with a large distance, for all the weird symptoms. Maybe your test has left it aside.

    I mean, really stop it . Don´t eat bread of any kind, empanadas, pizza, absolutely anything that has a remote chance to have Gluten and check again in a month. Replace by mushrooms, beans, risotto vegetables and fruits.

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