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

Hello world!

An introduction to me and my dystonia

My names Rebecca, I am 19 years old and a student.  My Dystonia first appeared at the age of 17 during my AS levels, the Dystonia pulled my jaw across and affected the left side of my face, it looked a bit like I had had a stroke. It affected my eating, drinking and talking abilities, and made me very self-concious.

To this day we are not sure why it came, but at the time we figured it may have been caused by multiple ear infections that had spread in to my TMJ joint. After 3 months of being passed from one doctor to another and have multiple tests such as MRI’s, I was finally diagnosed with a facial Dystionia and under a general anethestic was given a TMJ wash-out and botoux injections. When I came round from the operations, I was over the moon, my face looked normal and for the first time in three long months I was able to smile again. Little did I know that it could come back.

Now Two years later the Dystonia has returned. This time it affects my jaw/mouth, my eyes and facial muscles, my right arm and my right hand. What has shocked me so far this time round is how little doctors know about it. I have had one consultant wire my jaw shut, but this failed to work. Then had them manipulate my jaw under local anethestic but again this failed to work. Most doctors I have come across have never even heard of Dystonia, so therefore do not know how to treat it, and many seem unprepared to listen.

So now you know all about me and my dystonia. This blog will tell my dystonia journey, it will contain my natterings, musings, highs and lows, etc.

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Comments on: "Hello world!" (1)

  1. Well said Beccs. Sadly, the NHS is run nowadays by beauraucrats and not by the Profession. They are all now answerable to Management and Budgets and not to the needs of their patients.

    We love you and admire your courage through all of this and when you get to the other side of it I want to help you ensure that no-one else is treated like you have been!!

    Love you Grandad and Granma

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