New symptom?: Or just old? I getting used... - My MSAA Community

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New symptom?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
34 Replies

Or just old? I getting used to this inside the body vibration thing, but recently, my head has been doing like a wobbly type thing? It's very subtle and happens mostly when lm sitting still. Or trying to anyway. Any ldeas?

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Jesmcd2 profile image
Jesmcd2
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34 Replies
Judi4 profile image
Judi4

Jesmcd2 Is it wobbles or more a jerking motion? I have been experiencing a jerking movement. Judi😊

erash profile image
erash

Jesmcd2 Or is it a tremor?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to erash

Judi4 and erash l guess l would lean more towards a tremor? Idk it's hard to explain it's like the inside is starting to move out, if that makes any sense lol

Judi4 profile image
Judi4 in reply to Jesmcd2

Jesmcd2 The reason I ask, is because I have what appears to others as a jerk sometimes followed by a spasm.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Judi4

I'm sorry Judi4 :( mines not like that tho. I feel like a da** bobble head just not so bad

You should call your neuro on that tho. That sounds painful

erash profile image
erash in reply to Jesmcd2

Jesmcd2 might be dystonic head or cervical tremor? Due to brain messages causing hyperactive muscle contractions. This is only a guess based on your bobble head description. Supposedly there are tricks u can use to stop it like touching your chin etc. worsened with stress, fatigue...what else is new

obviously, check with your neuro!

cassielynn71 profile image
cassielynn71 in reply to Judi4

Judi4, is it kind of like a "tic"? I have what I call "trip chills". It feels like a build up of energy and then it comes out by my head doing a quick jerk and usually, but not always, followed by a shiver or chill (except that I'm not cold....ever -_-). I can hold them in but eventually it comes out. It could be mins, hours or days between them....Don't know if they qualify as a body tic or if it's something else. Never concerned me much but I know my office mates notice it. Nobody says anything, so I'm good w/ that! Lol.

Judi4 profile image
Judi4 in reply to cassielynn71

cassielynn71 Yes. Sometimes I can feel it coming on and if I try to surpress it, then my head starts spasming. Neurologist said this isn't a typical MSZ symptom. He sent me to a psychiatrist.

cassielynn71 profile image
cassielynn71 in reply to Judi4

Sounds like a tic. But I'm not a doctor either. My grandmother had one, my older daughter had a serious one as a toddler but she grew out of it. And I've had this one for about 30 yrs now. People can develop them or lose them at any age. They can test for Terrets, also. The physical form, not the verbal, obviously! My daughter was negative. I think they get that info from an EEG. Not sure. She's 19 now, so it's been a while! Lol. Though they feel the same as someone w/ Terrets feels. You can feel the build up and you can only hold it in for so long and then it has to "come out".

Best of luck w/ that. But as long as you're not in pain, don't panic. But definitely get it checked out and on record. :)

Judi4 profile image
Judi4 in reply to cassielynn71

cassielynn71 I did have an EEG in the beginning of the year and that neurologist was thinking seizure at the time, because I had had one before, but ruled that out. He did say the test showed something was going on, but wouldn't give me a diagnosis. He didn't want to diagnose my MS when my brain showed lesions. He did the same with my sister and wouldn't confirm her MS.

cassielynn71 profile image
cassielynn71 in reply to Judi4

I also just remembered something else the docs told me when my daughter was a little older and had already grown out of the body tics. She was placed on a med that had a warning that if the child had previously had a body tic but had grown out of it, this med could cause it to come back. It never did come back, but maybe one of your meds could be causing it? Maybe look through all the warnings and see if any of them say anything similar? Just a thought ;)

Nani5 profile image
Nani5 in reply to Judi4

Sometimes I feel like my blood is boiling.and it is frighting until you get used to it

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Nani5

Nani5 how in the world could you get used to that? I get flashes because of the monster, but that sounds horrendous. 😨

Jes🌠

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Wow, sorry you are experiencing that. Hope it subsides and goes away..

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to CalfeeChick

I'm hoping it's just stress related, will get done decorating today and will be one more thing off my list :D

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I'll be driving myself today, to dentist, ins. office, then to the craft store. Only 5th time I've driven since July. Need to start decorating, but need to find the energy..

WAshingtongirl profile image
WAshingtongirl in reply to CalfeeChick

I wonder if confidence, or a lack of it, might be contributing to your lack of energy CalfeeChick ? I know that drains me. I'm praying you can ignore those head-games and are able to drive today. Go when it isn't crowded and traffic isn't heavy. I think you'll enjoy yourself once you reach the craft store!💕

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to WAshingtongirl

I don't think confidence is a problem..both our cars are 5 speed stick shift..I did well. Got to all my stops. Glad to be back home.. lots of wind today, but you can see forever.

WAshingtongirl profile image
WAshingtongirl in reply to CalfeeChick

Stick shift? 😱 Not sure I could drive one of those these days. Clutch and gas peddle work equals multitasking and I don't multitask anymore. more. Talk about anxiety!

Happy all went well!!

erash profile image
erash in reply to WAshingtongirl

Yay! CalfeeChick

I haven't driven stick since my Army days when they nick named me "Crash Rash" for good reasons (although I always blamed my ground guide) 😅

Iona60 profile image
Iona60 in reply to erash

Big laugh.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to WAshingtongirl

If it wasn't for grandkids, I'd probably still be driving a sports car. Ha ha ha ha

erash profile image
erash in reply to CalfeeChick

CalfeeChick likely u r already going to your appts so hope all goes ok.

Interesting how driving is no longer automatic for me. And no distractions please! Phones and sometimes radio are off limits. Not to mention neuropathy and sensitivity break/gas pedals.

Tying my own shoes is also no longer automatic either 😜

erash profile image
erash in reply to erash

Oops...that should be brake/gas pedal. Silly homonyms 😜

cassielynn71 profile image
cassielynn71 in reply to erash

Oh my! I so relate erash !!!!

WAshingtongirl profile image
WAshingtongirl

Jesmcd2 , I had very slight tremors associated with MS about 15 years ago. Today my body hums or vibrates, but back then it shook. It wasn't always noticeable to others, but I felt the slight tremor in my hands and head--something you would see in an elderly person (I was in my early-mid 40s then). Sorry, but I don't remember how long it lasted. But if your anxiety is high now, that might be contributing to it. And how about your caffeine levels? More than usual? Either way, I hope it passes soon. Log it down and let your neuro know about it. And I'd come help with your 🎄decorations if I lived nearby! 💕

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to WAshingtongirl

WAshingtongirl no caffeine for me, although l love the smell of coffee, l cant stand the taste of it. Hahaha l drink water 24/7 to the point of my PCP had me tested for diabetes ~rolling eyes~ As far as it being a tic or torrets, unless it's extremely mild l dont think so.

Put it in my notes to ask my neuro. :)

WAshingtongirl profile image
WAshingtongirl in reply to Jesmcd2

Good!

Fancy1959 profile image
Fancy1959

Jesmcd2, it's Fancy1959. I used to have such trembling and vibrations in my arm and fingers and hand that I'd swear vibration cycle was turned on massaging bed. It felt to me exactly like that. Mine came and went for a good year or more. it doesn't seem to bother me now. Either I've grown accustomed to or they're not as bad or they just went totally numb to the elbow.

Ask anybody who's had MS very long knows, fun with MS never ends. It comes and goes in different state and it's up to us as his Warriors to take each stage and put it back in its place. I hope other people in this chat room have other tips for you that will help to ease the strange vibration. We all know you are made of tough stuff so hang in there until it subsides are you grow accustomed to it. We can take anything together. I wish I had the magic solution. Oh it would be worth a billion dollars!

angelite profile image
angelite

Hi Jes,

I'm a bit late to the party ( as usual ! ) but thought I might just mention my tremors. I call one 'incredible vibrating neck stem' and had it mildly the first time round but it is more pronounced since relapse. All my tremors ( neck, spine, limbs ) seem to be action/postural - sustained when muscles are in use/ in certain positions but absent when relaxed ( lying down/ supporting chin with hand etc ).

ninds.nih.gov/disorders/tre...

Tremor can be intrusive and make simple activities difficult .

I call my internal tremors' wobbling internal organ syndrome' lol ! I tend to get this on sleeping/waking. As with all things, stress or fatigue can worsen existing symptoms. Fingers crossed it is only a temporary glitch for you. Angela x

greaterexp profile image
greaterexp

I'm sorry you have a new symptom to add to the list. I pray you find relief quickly!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Thank you greaterexp l tried erash 's ldea by touching my chin when l noticed it, and it seemed to work for awhile! Yeah!!! Thank You all!!

Hi Jesmcd2

I always describe my 'inner head/body sensation' as 'think of the inside of a compass'. My body and head turn and then it takes my brain inside a while to catch up, 'center and focus', on my environment and what I'm doing. Things don't 'spin' just 'wobble' and seems to take time to get centered on what I comprehending or taking in. Delayed processing?

Whether walking forward, turning my head to something beside me or even sitting in the passenger seat looking out the car window (which I don't do now if I'm driving!). It used to happen only when I was walking and turned around but after my last exacerbation 3 yrs ago it happens then and when something else around me moves, sometime when I am 'thinking ' of some kind of motion. I'm in my early 50's so maybe it's age there also. (MS dx in late 80's)

Maybe that is a way of describing what your feeling?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to

Hi Hidden

I do get that feeling alot when in a car when it's driving. Mostly when it's stopped. It still feels like it's moving. And l freak out sometimes when in a dbl lane, and they start to move slowly. Ugh. It's like you said, it takes a min for my brain to catch up.

Unfortunately this is not quite like that. I can be just watching tv, and l just feel like my neck isn't doing it's job. Go figure.

Always a roller coaster ride with MS. You can't say it's not interesting that's for sure :D

Welcome to the room btw :) So glad to have you here and part of our ever growing family.

Ps lm 51, so maybe it is old age ugh... but your only as old as you want to be... l chose to be 30 again :D

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