cocoa

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 cocoa

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 cocoa

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-wibblywobbly

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_Girl

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_Girl

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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pollybanana

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 pollybanana

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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rideabike

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 rideabike

Do you know what was causing it?

Sounds like the same sort of thing

Xx

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rideabike in reply to ww-wibblywobbly

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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rideabike

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.

Sherena

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.

Sherena

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 Sherena

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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janyj

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!

pinjem

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-wibblywobbly

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