cocoa2 years ago

Yes, I understand exactly what you mean. For me, it always happens at night, which then keeps me awake. Some nights are fine though, so thankful to get a good sleep then.

I have mentioned it to the neurologist and GP but don't get an explanation. I don't think they know what to say, so just bypass the subject.

💤

ww-wibblywobbly in reply to cocoa2 years ago

Yes keeps me awake too!

Looks like the professionals don't know what it is!!! I'd just like to understand really

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ww-wibblywobbly in reply to cocoa2 years ago

What type of ataxia do you have cocoa? Mine is still unknown so far, they say it's genetic. All tests so far have come back negative

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cocoa in reply to ww-wibblywobbly2 years ago

I'm the same as you, with no firm diagnosis. Other family members had balance problems, so they are still looking for the gene.

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Sailor_Girl2 years ago

I can't say I've experienced this sensation Alison, but if it used to occur for just a few hours and is now happening for up to a week I think you need to present your doctor with more information and data and tell them the duration is changing as I can imagine that it is having a debilitating effect on you.

Do you have any ideas on what might be bringing it on and what causes it to go away? How many times has it occurred?

ww-wibblywobbly in reply to Sailor_Girl2 years ago

Hi over the years it's occurred many times. Usually every few months I guess 🤷.

When I mention it to the drs they don't seem to know what it is so they don't enter into a real conversation about it🤦🏽‍♀️.

I don't know what triggers it at all. Maybe someone else does 🤞

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pollybanana2 years ago

I have these strange sensations most nights, it's a bit like pins and needles but not so strong. Sometimes my limbs jump like I have had an electric shock. I understand it to be scrambled nerve sensations. I have unknown ataxia.I have had medication for it in the past but it did not help me.

Might be worth talking to your neurologist.

ww-wibblywobbly in reply to pollybanana2 years ago

Thanks Pollybanana,

Not sure if that's the same sensation or not🤷.

I do sometimes feel like someone has stuck a needle in me and sometimes it's like an electric shock. Then also I can spasm and my arms fly up into the air (usually It's my arms), but can be other areas too! I don't really get pins and needles feeling.

This feeling is continuous when it's there. And I can't think of another way to describe it except for a continuous current going around my body.

Thanks for the info though.

I have mentioned it several times to my neurologist but as I said all they do is shrug!!!

Xx

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rideabike2 years ago

Yes I have had it....first in my forefinger, then thumb on same side. It's progressive as now it is on both sides and runs along my hands (forearm too) like a vibration and one night it was like muscles were trying to fire all over the top of one hand. Very odd!! I had tremors in the biceps brachii (under the arm) one time. It hasn't happened anywhere else so far.

ww-wibblywobbly in reply to rideabike2 years ago

Do you know what was causing it?

Sounds like the same sort of thing

Xx

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rideabike in reply to ww-wibblywobbly2 years ago

I have no idea but thought it might be related to ataxia. I'm new to this forum and recently had the testing showing ataxia and don't know much about it except from the internet.

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rideabike2 years ago

To anyone replying: Do you also have weakness in your forearms and pain although not severe but more so after lifting or using the arm? I think it's related. It also occurs when lying down rather than during the day. Interesting to read the replies.

Sherena2 years ago

I have been trying to explain the exact same sensation, it's like an electric current running through my legs, and I noticed that I suddenly have involuntary movements in legs and arm. I have sca-3. I have been feeling more exhausted than before as well.

Thank you for describing it as I didn't know how to.

Sherena2 years ago

Research and instinct led me restless leg syndrome - it can also affect other parts of your body as well. nhs.uk/conditions/restless-...

What do you think?

ww-wibblywobbly in reply to Sherena2 years ago

Not sure if that's the same really. No mention of the sort of buzzing feeling and mine goes through my whole body! I do spasm much more when I have this sensation though, usually my arms more than my legs. It's difficult to figure out isn't it and so far seems no drs have told anyone what it is!! ;(

Xc

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janyj2 years ago

Yes, get like a buzzing down my legs- doesn’t hurt, just feels weird. Only notice it when sitting down . Haven’t asked doc as all docs at my surgery are clueless when it comes to ataxia!

pinjem2 years ago

I used to have what I thought of as being like a WW2 aircraft in a death roll stress/ thrum. I felt my whole body was vibrating. I think my poor body was superstressed, it got worse over a month or so then stopped when I gave up gluten. I think I was reaching the edge of my capabilities and was over reaching myself and exhausted. I have only felt it a little since when really tired and beyond my capabilities. GP's didn't know what it was.

ww-wibblywobbly2 years ago

That's a good description - WW2 aircraft death toll thrum ;). It's definitely like a thrum passing through my whole body. I don't think it happens particularly when I'm very tired, I do tremble when I'm very tired though but that's a completely different sensation. I'm trying to figure out if this happens more when I'm stressed - I stress quite easily now and I'm trying to learn to control my stress levels by looking objectively at what's stressing me. Before having ataxia I hardly ever got stressed, I could take on the world 😂

Xx

Latestrumor2 years ago

I have some back issues and have been told it’s nerve related. Daily exercise, stretching and magnesium and vitamin D have helped. Excess weight will make it worse so stay thin

Hidden2 years ago

I get very very similar if not the same, I have always put it down to the Central Nervous System as this is a form of electricity which of course travels through the whole body.

I sometimes do things (rightly or wrongly) by process of an elimination IE what else could cause such sensations running though the body.

I think Neurologists will only say yes, no or offer an opinion if it is medically proven which is a reasonably train of thought.

What causes it and if anything can be done about it, probably not, I just put it down to another symptom of this dreaded condition.

I have SCA 6 and dystonia which is a like Parkinson’s apologies if you know that already but dystonia is another condition that not many know about including doctors.

Hope this is a little help.

You stay strong my friend.

Who Cares Wins.

KiwiBob2 years ago

I have this in my hands and fingers after I carry things

Klutzy1 year ago

Are you referring to something like an internal tremor? I get those, and they are the weirdest sensation. I know others who have PD and MS also have experienced the internal tremors.

ww-wibblywobbly in reply to Klutzy1 year ago

I don't know if it's called an internal tremor or not? When I get tired I can feel that my body tremors but other people can't see it unless I have to do something with my hands. I imagine that is an internal tremor 🤷🏼‍♀️. That usually passes after I rest.

But this other strange feeling can stay for days at a time and makes me very tired.

I'm not sure if we're talking about the same thing or not .

Xx

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Klutzy in reply to ww-wibblywobbly1 year ago

Yes no one can see mine, but I feel them.

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ww-wibblywobbly in reply to Klutzy1 year ago

I've just been researching internal tremors on the net and it's also mentioned body buzzing. So maybe they are. Thank you, you have probably answered a question that's been bugging me for years :).

Xx

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Klutzy in reply to ww-wibblywobbly1 year ago

You're welcome. Good you looked it up. I do get the whole body internal tremor, but lately I get it more in just my legs. I guess I could say my legs buzz. I just think of it like a heavy vibration. My first instance was when I had it it in my stomach. It literally woke me up and was quite alarming. Now I'm use to them and all the other weird things my body does.

I wonder if there is a problem with the brain signals and that;s why they occur.

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ww-wibblywobbly in reply to Klutzy1 year ago

Yes I guess there probably is some connection problem from the brain to the nerves. So many strange things seem to happen from time to time. I have a tendency to put everything down to ataxia. I often get told off by my GP for not bothering to contact him as things could be something different. But usually it's from the ataxia LOL

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