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The Australian Sjögren's Syndrome Association
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Anyone have a dystonic tremor?

Hi peeps, was curious to see if anyone on this site has a dystonic tremor ? Have ruled out a few nasties including lupus at the top of the spinal chord and narrowing it down to a dystonic tremor. Symptoms are a twitching head....think its caused by a muscle spasm at the top of my neck.

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Hi I have this I feel like my neck shakes from the inside I have an appointment mid December. Sometimes it feels like I cant hold my head up neck feels week I had c3/4 ddisectomy 15 years ago so don't know if it's from that I have Sjogrens Syndrome.

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Thanks Hellybelly, mine's the same. Feels like it's on the inside too. Wasn't sure for ages if it was brain or muscle related and neurologist wasn't 100% either. But my chiropractor has felt the muscle spasming so concluded it's that. Been googl8ng and found a woman who has the same thing as me and has done physical therapy which is helping. Be keen to see how you get on. Good luck for December.


I have similar - twitches and tremors throughout my body including the back of my head and neck.

Currently the neurologist is stating that these symptoms are due to what she calls “functional overlay”. But my strong suspicion is that most neurologists haven’t the first clue about Sjögren’s or how overlapping degenerative disc disease impacts on this rheumatic disease.

If, for instance, a person had high systemic inflammation levels that are untreated then it is likely that we are going to feel fatigue.

Fatigue of itself can cause twitches, weakness, tremors etc - otherwise known as Parkinsonism. But to call this functional overlay or functional neurological disorder (FND) as my latest neuro has is to greatly underestimate how the very dysfunctional/ organic fatigue of Sjögren’s can impact on our delicate nervous systems.

Having said this you should probably be getting this checked by MRI or nerve conduction studies before blaming Sjögren’s fatigue.

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Thanks Twitchtoes. I did ask for an MRI...but the neurologist didn't think it was necessary as he ruled out the lupus. So thinking a physical therapist might be a good option or even BOTOX into the specific spasming muscle, seems to have some positive results. I luckily don't have the fatigue that many of you have

..at least at this stage so count myself very lucky. 😊


It doesn’t have to be Lupus to warrant investigating? Sjögren’s is just as serious a disease and equally likely to cause neuro symptoms as Lupus

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