Generalised Dystonia | DYSTONIA FACTS | Dr. Jean-Pierre Lin

In this DYSTONIA FACTS video Dr. Jean-Pierre Lin from Evelina Children’s Hospital in London, UK covers generalized dystonia. He mentions children are mostly affected by generalised dystonia and what they might experience in their developing years. Dr. Lin closes and gives advice on managing and coping generalized dystonia.
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[@farkhondehrezaie7725]

Thank you so much for information. I am suffering from cervical DYSTONIA, horrible disease.

[@1Gibson]

Thank you for this Dr. I truly believe this is what my daughter has been dealing with along with the already diagnosed CMT2A. We are scheduled to see her neurologist this coming week and Im going to bring this information up to him. Thank you.

[@OTAZoe]

I am a carer of a young adult with generalised dystonia and Parkinsonsism. Do you have any links to resources and videos on caring for adults with this condition? I would love to talk to someone who is an expert in this, as resources for adults are sparse in our area. As soon as the patient reaches adulthood, a lot of the support falls away.

[@MsGinaKP]

I’m very curious what your thoughts are on “serial casting” for foot dystonia. My daughter was recently diagnosed with generalized dystonia and doctors have done 2 rounds of serial casting on her feet. Both times have disabled her completely. First time took at least 6 months to learn to walk again. This time she has yet to walk since I demanded they remove the casts. Starting Botox injections next week then they want to continue casting her feet. I don’t want this at all. But I need a dystonia doctor to confirm my belief that the casting is making her dystonia worse.

[@denniemrozek3488]

You seem to know a lot about dystonia. I wonder if you know of dystonia caused by a whiplash injury. My GP thinks I have dystonia. Neurologists do not understand what I have. So it must be rare. I have a movementdisorder now of my whole body. It started the second of the accident. But over the two years it got worse and worse. I walk very strongly hyperkenetic.
But actually it is done by neck muscles. They jerk my brain down in pulsating unvoluntary movements. It feels like having a concussion every second. It gets worse when I move.
I would be very happy if you would give me a reply.

[@SweetiePieTweety]

Your comment “neurologist do not understand what I have”. This is incredibly concerning.
It is the neurologist field that it is incumbent to understand what you are experiencing. Onset post “accident” is key. Please please please keep a progressive journal of developing symptoms close and up to date. At some point with diligence you will eventually find a doctor willing (it’s not an inability to understand), it’s an active unwilling to acknowledge what is known. This is pervasive within the medical field today. If it can be shipped off to psychological it will be. Providing care for a patient with a severe disability is expensive for “the system”. Placing your name in association to an accident disability that might involve litigation and long term disability and system provided intensive care is going to be avoided. Doctors do not prefer to be called to court to testify for any type of testimony to injury associated with accidents or securing disability. They are covered by their own liability insurance and not acknowledging understanding or validating the symptoms may in fact be a result of nerve or structural damage serves them but not the patient. The medical gaslite. Gaslite was word of the year for 2022 for a reason. It is pervasive and self serving the system by invalidating real medical states as psychological in all aspects of patient and citizen care.
Document document document. Diligence.

[@faux4u2]

Dennie, please look up TMS for Dystonia, (Transcranial magnetic stimulation.)
I’m experiencing no sever extremity cramping from Dystonia since I began TMS treatment in January 2023. I’ve had Dystonia for approximately 8 years now.
This is the first time I have experienced no movement disorder. This is very new to me, yet I’m so happy to share the positive feedback for others too, whom are suffering.