Anyone have a dystonic tremor?

[wsmith]

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.

[Hellybelly56]

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.

[wsmith in reply to Hellybelly56]

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.

[Hidden]

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.

[wsmith in reply to Hidden]

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. 😊

[Hidden in reply to wsmith]

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

[Aquamarine88]

Oh my gosh Ive only just joined this site and reading sore eyes and Sjorgrens and saw your post - wsmith.

I was at a major hos for testing possibly MS and they told me i had dystonia not Mutiple Sclerosis oh and by the way your have Sjorgrens Raynauds and possibly RA Well i said pretty bluntly i didnt come to a stack of diseases tsake them back !! that didnt happen !!

Well i didn't take much notice as i was so relieved to not to have MS.

I moved to the beach oh my the wind the sand and salt water agony i then paid attention to the sjorgens.

The shaking kept on sometimes couldn't hold things Its ended up being Torticullis spasmodic dystonia - Much google -(as the medical cure or slowing of it is botox to the neck muscles) - brought up Feldenkris not avaliable near me so I tried Bowen Technique - quite remarkable results.

I did a range of 6 sessions and it was really noticeable the difference. that was a few years ago and i havent been for a year and have booked in for Bowen tomorrow and may have to do a few once a week for 6 weeks.

It's a very gentle muscle release doesn't hurt (except for my jaw area) and works on the muscles being helped to realign them selves by gentle pressure.

Any stress, anything, anykind, can bring on an attack and i always ask people not to fill the tea/coffe cups as i never know if i'll shake although its milder than when i was first diagnosed.

I only know one other person via facebook in a differnt state with something similar.

Its a strange think for sure. hoping you've had more clarification since your post - the movement disorder clinic worked it out theo a series of physical tests and excersises over months i might add

[wsmith]

Hi Aquamarine88, well I have tried a lot of things but no drugs as I am still trying to remain drug free as long as I can full stop my solution has been an amazing chiropractor who has manipulated the C1 (very top of neck and nasty) and cranial adjustment plus massage to stop that muscle spasming. The chiropractor also put me on thiamine (B1) and zinc which helps with neurological issues eg dystonia. Stress is the biggest cause for me, I think. Just going through a full on time...and the twitch has started again. Nothing like it was thankfully. I might look into that Bowen Technique too! Thank you and good luck.