Neurophysiological testing for temors

[Legs-alive]

Hi there, just wondering if anyone else has had neurophysiological testing for temors (uk) & what this entails? Many thanks in advance.

[HarryB Administrator]

Hi legs-alive

Do you know what specific test this would be? Have you already been referred?

Harriet

[Legs-alive in reply to HarryB]

It’s to find out where my tremors are coming from ie brain, spinal cord. As well as the intent tremors I’m suffering from full body tremors from my head to my toes. It will be at Sheffield hospital under professor Hadjivilassiou request. He said I would have electrodes placed on my scalp, I’m thinking it could be the EEG as I know its not the ncs or the EGG.

[HarryB Administrator in reply to Legs-alive]

Hi legs-alive

An EEG certainly fits with Professor Hadjivassiliou's description. I had an EEG over 25 years ago just before I was diagnosed with ataxia. I had electrodes put on my scalp and had to watch a screen, focussing on a grey square in the centre of while other multiple black and white squares like a chess board changed pattern around it. It was completely painless.

Harriet

[winch in reply to HarryB]

Hi Harriet

I often wonder about the different tests etc that are carried out on those suffering from Ataxia which I read oh this site. I was diagnosed with Cerebellar Ataxia many years ago and see my neurologist annually (sometimes a Registrar). I have only once had a MRI scan, about 5 or so years ago, and that was at my request. I have a full body tremor but it is only seen as 'par for the course'. I was referred to a lovely consultant specialising in botox injections for my head tremor but sadly, I had a nasty reaction to this, although I did try it twice. I have never been referred to a neuro-physiotherapist.

Thank you for this site.

Winch

[Legs-alive in reply to winch]

Hi winch, do you go to any specialist ataxia clinics? This is where the majority of testing is done & through. You can ask your gp or your neurologist to refer you to one or alternatively if you have Facebook you can join ataxia uk on there or on twitter @AtaxiaUk where there’s lots of information regarding this clinics & testing.

[HarryB Administrator in reply to winch]

Hi winch

There are a number of investigations that should be carried out at the point of diagnosis when a doctor suspects a patient may have Cerebellar ataxia. Further investigations may be necessary to discover the underlying cause of the ataxia if not already found, for example genetic tests (in the form of a blood test) or a muscle biopsy. A new symptom may require further investigation, particularly if the origin or underlying cause is in doubt. In the majority of people with ataxia routine, ongoing investigations are not necessary. The exception is people with Friedreich's ataxia (FA). People with FA should have there heart checked regularly as they are at risk of developing cardiomyopathy, a thickening of the wall of the heart. Cardiomyopathy is not seen in any other type of ataxia.

I had a similar experience to you with my head tremor. Fortunately it is usually very mild but can be quite debilitating when I am anxious or under stress. I tried botox injections a few years ago. I was given a very small dose but even though I thought the tremors improved my muscles relaxed so much I couldn't keep my head up! It was a horrible sensation, worse than the tremors, so I didn't have the injections again.

Unfortunately there is a not a neurophysiotherapy service near to where I live that I could be referred to. I would ask your GP or neurologist if you could be referred to a neurophysiotherapist and if they say no, ask why not. Why do they think it would not be beneficial to you? I cannot emphasis enough the importance of keeping moving and doing any kind of exercise. I now do Pilates which I have found life-transforming. (I probably should've mentioned earlier I have an idiopathic cerebellar ataxia!)

I am delighted you find this site helpful!

Best wishes

Harriet

[winch in reply to HarryB]

Thank you Harriet for your reply which is very helpful. I will speak again with my GP/Neurologist and also give Pilates a try.

Dawn

[Legs-alive in reply to HarryB]

Hi Harriet can I ask are these full body tremors normal in CA?

[HarryB Administrator in reply to Legs-alive]

Hi legs-alive

Thank you for a your question. I know that tremors are often seen in patients with CA and I see no reason why a full body tremors should be any different. However I must stress I am neither a neurologist or an expert in ataxia and your question is best directed towards Professor Hadjivassiliou.

Best wishes

Harriet

[Veteran250 in reply to HarryB]

Hi folks......good morning Harriet, hoping you are keeping well..... I have had hand tremors ever since I was a small boy, I cant hold a cup or glass to drink anything without it splashing everywhere, so my cup at home has a lid on it, if I go anywhere for more than a day then the cup goes with me.

My parents never had it checked out with any doctors, and I passed my entrance medical for the RAF back in the 60s.

About six months ago I started having siesures and was refered to Kings College Hospital in London for brain/head scans A short while after that I was asked to return to my GP, he in turn sent me to see another doctor who told me my siesure s were only mild, and was given Lamotragine to take morning and evening and it seems I will be on them for the rest of my life. The same doctor mentioned my hand tremors and I told her I have had them all my life since being a small boy, she said we could look into it if I wanted and I said at aged 74 I dont see any point.

So my life goes on with tremors, Epilepsy, and every other medical problem I have, but I wont bore you with anymore.

So just get on and enjoy life as best I can..... I gave up smoking and drinking and had my last of each on 13th August 2007, and yes I do feel better for it and saved loads of dosh..... so life goes on! 👏👏👏😀👍🌹