Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
This is the kind of thing I type into Google and can't find even a hint of anywhere.
My spine. Moves around. By itself. It starts off as what feels like a rocking feeling in my head ( which comes under vertigo) except my head and spine ARE actually moving,
I'll lie down and put one hand on the back of my neck and one in the small of my back. This is not the sensation of movement, it's not vertigo, it actually IS MOVING.
Just slightly enough so that no one else can see it. It's not exactly a tremor although those happen too.
What the heck is this called? Anybody else ever have anything like it?
(breaking up the post for easier reading for many here)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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posted
I guess? So weird and scary. They're not jerking movements, I'm the only one who can tell it's happening. Course it could always get worse..
Posts: 2057 | From Florida | Registered: Feb 2015
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you can feel the spine movement with your hand then a medical practitioner should be able to feel it with their hands too.
They are used to feeling organs, tumors, stuff that can only be felt with sensitive touch but not seen.
Jordana, i'm sorry to hear that you are experiencing another distressing symptom. Hopefully it will go away with treatment soon.
Posts: 5237 | From here | Registered: Nov 2007
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Silverwolf
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posted
Hi <<<<< Jordana >>>>>,
It does sound like the beginning stages of Myoclonus,as Lymetoo has suggested.
Sometimes when I am having issues, my neck and upper back,spine area feels odd, then if things worsen it can go into what is believed to be Myoclonus seizures.
It can go into arms,and eventually travel down to my legs if it is bad. I get exhausted after words, and it feels like the muscles are drawing up and knotting into painful spasms.
For me, if it happens, I try to relax, not easy with the jerking and pain. If I try to stop it it worsens. Never fun.
Are you taking Methylcobalamin B-12, it helps me some and is easier on the kidneys that Cynocabalamin B-12.
I hope it calms down soon,and doesn't worsen.
jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Jordana
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posted
I think a person could feel this but the problem is that whenever I go to the doctor it's not happening. I have internal tremor I've tried to show them but of course they can't feel that.
Myoclonus Sigh. Marvelous.
Posts: 2057 | From Florida | Registered: Feb 2015
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hey <<<<< Jordana >>>>>,
I know what you mean, and it does get frustrating, it's like it wont show up when you are at the Doctors.
The they look at us,like we just grew another limb in front of them. And they want to know if we are depressed.
Aargh, well prayers will continue for you, this isn't easy. At least we have LymeNet,and can compare notes and maybe find some answers.
Jus' Silverwolfi sighing right along with you.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Jordana
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posted
When I went to see my neurologist she was telling me that "internal tremor" was meaningless and not connected to any disease. There is like this library of neurological signs they look for, and if you don't have any of them, you don't have a disease they can treat.
End game.
Actually internal tremor probably indicates a ton of different problems and myoclonus does too. They just don't know what they are. Different idea there.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
My spine feels like it's moving, but I really think I'm feeling my aorta all the way down my back.
Think that could be it for you? That might be why your head goes in circles first. Does it move with your heartbeat? Mine does. It is sort of a rocking feeling in your spine too?
Posts: 748 | From Texas | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Mine slips in and out of alignment with spasms .. lets form a club oh wait this is the one ..iv mag nesium and patricia kane protocol and bvt and roceph have helped ...
what did new doc get you on again? Did babs smear come back
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Member # 45305
posted
SickSam yeah!
Then it sometimes dissolves into muscle twitches but not always. Sometimes it just pulses or hums. It seems like the longer it does that the more likely it is to become twitches.
BTW, I got my carotids and basilar arteries imaged: clear as a bell. Sure would be nice to know what the hell it is.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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posted
Hey blue...I keep going back and forth on magnesium because of the Magnesium controversy. I was reading that people with chronic fatigue syndrome have something going on where their veins make too much serotonin. But I gotta say I'm sick of reading all this stuff when nothing I've tried at this point turns me back into a human being.
I'm on Bactrim and Doxy. Tried gabapentin and decided not to continue, it makes me shake. Babesia smear in a couple days yet.
Posts: 2057 | From Florida | Registered: Feb 2015
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There is no controversy about magnesium. It's a necessity.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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Member # 45305
posted
The controversy is that some LLMD's think that loading up on magnesium feeds bugs. I go back and forth. It's never done much for my symptoms, harking way back to the beginning of my personal mess.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Sounds like our backs are similar. I do have another type of pain in my spine too though, feels kinda like a spinal tap, but that's a totally separate feeling from the pulsing/rocking/moving.
One doc told me the back thing is Bartonella, which could make sense since Bart infects endothelial cells and the aorta is the biggest vessel in the body.
Magnesium has never helped me either, but I keep taking it because I'm on the dreaded Levaquin.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I was going to guess spasming muscles. For me, taking mg glycinate does help to relax muscles.
Once I found a brand that helped, my doctor told me to test to tolerance, so I found that daily amount for me.
Just curious whether you've ever experienced a mg brand helping.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
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posted
Thanks Robin -- I've tried all kinds of mag and still take it -- even the angstrom mineral stuff; malate, etc. I've even tried flexeril, even a couple at a time.
Neuro thinks its a brain thing, possibly something like a vestibular problem.
I'm starting to think it might be the start of Parkinson's, which my grandmother had. Or hidden spine damage.
Sure wish I knew, it's been going on for three years now, abx haven't helped at all. I think after a year of treatment I can say that. LLMD is pulling out all the stops looking for babs.
Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
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posted
I used to vibrate, not a tremor but a vibration. LLMD said he hears that a lot.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
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posted
When I talked to the neuro she said she hears it all the time from people and it's meaningless. Like she won't treat or investigate internal tremor because it doesn't mean anything is wrong. So it's not just us.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
That doctor sounds not-so-smart. It's not normal to feel like you're shaking all the time. If they felt like that themselves, I'm sure they'd investigate. Hearing it and experiencing it are totally different.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
"I have internal tremor I've tried to show them but of course they can't feel that."
You could hold a piece of paper on the edge-ish to see if the tremor shows itself on the opposite edge of the paper. The paper acts as a magnifier of movement.
I had that too and papaya leaf tea got rid of it.
Posts: 764 | From Northwest | Registered: Sep 2014
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Jordana
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posted
Hm. What does papaya tea do?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I have internal tremors too. They are horrible. It hasn't been as bad since starting treatment.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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