Internal body vibrations all night

Doc Google ought to be sued for malpractice.

You sound like me with the auras. I got them more often when I was younger—hormone related. But yeah they likely explain the spots on your brain MRI.

Another poster mentioned checking your A1C. That’s definitely worth a look.

Best of luck!

You have really weathered a helluva neuro storm—and still are. To a lesser extent, so am I. I wonder if you might have had myelitis—just more extensive than mine.

Last time I checked—and correct me if I’m wrong—ALS is, as you said, a motor neuron disease, which means it doesn’t cause sensory symptoms. Nor would it improve with steroids—or anything else. It’s progressive and untreatable—last I checked anyway.

NIH would be a good option for you. I would be really interested in what they have to say. Do keep us posted. And best of luck!

Yes!It has been so crazy!Going from a healthy person in my 40's exercising all of the time to barely being able to function.I was looking into myelitis.It looks like alot of things can cause it.Autoimmune Diseases,Viruses,etc.I just wonder if that one time iron infusion set ot off and than everything went haywire in my body.My Brain and Spine MRI were o.k.,but I wonder if they are missing something with the spine.I have not had a spinal tap or muscle biopsy yet.Just the two EMG's.You are correct about ALS.The only reason I keep on thinking it is a possibility of Motor Neuron disease is because of the twitching all over and the loss of strength when talking,swallowing,chewing.I guess that could be brought on by other diseases.I did check for MG,but had not been checked for Lambert Eaton Syndrome yet.There are so many diseases.I will let you know if they ever figure it out.Thanks Again!

Exactly! I know exactly what you're saying: one day, you're a perfectly healthy person and the next you're flat on your back in a hospital bed. I was in the Neuro ICU for a few days. Very bewildering experience, to say the least.

Indeed, myelitis has many possible causes. Mine is autoimmune--a positive autoantibody. If your neuro symptoms immediately followed the iron infusion, that would be worth looking into. (I'm sure you mentioned it to your doctor. What did they say?) It could be a trigger, although I have not heard of it. (That means nothing, BTW.) I'm thinking Covid triggered my bout of myelitis.

You can lose muscle strength with myelitis. It just depends which part of the spinal cord is damaged. I have only sensory symptoms, which means the damage is in the posterior column of the cord. If you're having sudden onset of motor and sensory symptoms with no evidence of brain dysfunction, I have to wonder why myelitis wasn't considered. Maybe because of the negative SC MRI.

You are a puzzle. I was at first, at least with the cause of the myelitis. I hope you find answers soon. I know how stressful not knowing can be.

Take care.

Yes!I never thought I would be in this situation.I worked in healthcare and knew it could happen,but you never think it is going to be you.I am glad that you are doing better,but sorry you had to go through all of that.I think whatever I have was brought on by a few things.I think the years of anemia probably wore my body down and than when I got that infusion my body probably went into some kind of shock since it was the high one time dosage.I also think I had covid at that time too,but did not know it at the time.The Beach place I was staying at right before I got the infusion had people previously staying in it that all got covid.I did not know this until later.The day I had the initial reaction that stemmed all of this it was really hot and and I was walking on the bike trail the day before in the sun/heat.Something with the iron/heat/covid.The really weird thing is that my years of severe periods pretty much stopped after the infusion for almost a year 1/2,but just recently started up again.I think that is somehow involved too.Maybe some kind of infection.I got checked for everything,but I am going to get rechecked for cancer.The only thing I have not been checked for is endemetrosis.A nurse I use to work with told me the only way they found hers was through larascopic surgery.I didn't realize thar endemetrosis can spread to all of your organs.The Doctors are confused because they can't really find anything.My MRI for spine was normal for my age.A little bit of stenosis,but I went to a spinal surgeon and he said everything looked o.k.He was telling me to get another vaccine because he heard that can help if this was all brought on by covid.My one EMG was normal and the other EMG was not,but the neurologist told me he just thought it was possibly a metabolic muscular disease.I went to two endricinologist and they told me it is not metabolic and that it is neurolgical.I have put on alot of weight.I am sure metabolism is involved,but I am pretty much couch bound too.I just don't have any strength in my back,behind,neck shoulders,trunk.I did Genetic Testing and it showed a possibility of muscular dystrophies such as limb-girdle,but both Neurologists told me it is not that.They just don't know.I meet with a Team of neuromuscular doctors next.I did have a few positive ANA's with a high speckled pattern of 1.80,but the Rhuematologists told me it is not Lupus or any other Autoimmune.They were saying neurological as well.I already have thyroid disease and the only other disease we have in our Family is Lupus.When I walk it looks to me like I have that disease Anklosing Spondylitis.I use to stand so straight and have such good posture.I think a virus attacked my spine and that is probably why my first symptoms were the stiff neck and not being able to swallow.I was even looking at neurological diseases that could be brought on by low iron.Myasthenia Gravis can be cauaed by low iron,but I tested negative.The Doctor told me that a specific antibody for MG came back borderline,but labcorp did more testing and it was nothing.I just keep on hoping that someone will see my symptoms and recognize them and be able to tell me what it is.No Doctor knows.

How incredibly frustrating! And mind-boggling.

Yes, it’s neurological. Your symptoms are. But why?
The million dollar question, I know.

Interesting that you have thyroid disease (I do too), a family history of lupus and a positive ANA. Did you get any other autoantibody work done? How about autoimmune muscle diseases like dermatomyositis? Has that ever been mentioned?

This puzzle must be solved. You need answers. Even if there’s not much doctors can do, just knowing what’s wrong can be comforting in a way. Like you, my symptoms have not improved, only stabilized, but knowing that the cause is autoimmune came as a great relief. (The differential included paraneoplastic syndrome—ie, cancer). So, re: your situation: big guns may be needed. Start with a neuro at NIH or wherever you said the closest academic medical center is.

I also used to work in healthcare, so, yeah, you see an awful lot of horrible sheeyut, but you never think about it happening to you. That’s how you survive in such an environment, I suppose. I got the hell out. lol. That’s how I survived.

Anyhoo, take care, my fellow neuro friend.

Hey there, I’m still struggling to find out the cause of my internal Vibrations. It all started in mid Sept of 2020, I’ve been to numerous Drs. Neurology, MRI’s and numerous tests and just had another MRI on brain and lumbar. Everything looks fine the Dr says. So I’m anxious moreover now to find out what these are. I’m 63 and these started in my left foot in Sept 2020, buzzing so hard and loud. 24/7..Well by the time Nov. Got here the vibrations went up to my knees on both sides, then by the time Dec. , these Vibrations moved up to my high waist. So yeah, I feel them in my crotch or rather full butt area. Can’t sleep for these. Actually I didn’t sleep last night. I have a hugh log of insomnia noted and I’m sure it’s from these Vibrations. It feels grinding to the trunk of my body. There’s been a small number of times where they did calm down. Like having TKR, they stopped for a few days. I had an occipital nerve block, it lasted 3 weeks till the vibrations came back. Then this Jan. I had emergency Colon obstruction surgery and the vibrations stopped for 5 weeks. Then I got sick last year with bronchitis and put on meds, steroids and they too stopped for roughly 5 weeks. But when they came back it was as if BAMM they hit me with a vengeance. Still the high grinding speed and I swear I can hear them now, as this Sept. will be 4 years. I’ve been to U of M Michigan Hospital in Ann Arbor, Henry Ford Hospital to seek Neurology’s help. I was told a year ago May have to seek The Mayo Clinic. Now what can they do so I started researching here for help. I’m finding I’m not the only one suffering from these. So with all these other people suffering from these, then how come I’ve not seen any solutions from these people? Wondering if something drastic happened to them where’d they gave up and checked out. Believe me, if it hadn’t been for my strong family and faith I probably wouldn’t be here myself. So I’m hoping there’s still hope that someone can come forward and tell what their solutions was. 🤔 it messes with my Body, to function, to even walk, I struggle feeling like I may fall over with balance issues. The only thing that shows up is a cyst in my spine, a Sprinx, I’ve seen it but they can’t say if it’s causing the vibrations. Or could it be from a pinched nerve, a Vagus Nerve. I’ve even took diff Vitamins that I never took to see if I was low on anything. Not really, but still playing around with it. One Dr says to take Vitamin B2, it’s hard to find in stores. Guess I’ll check Amazon next. But if you have any other ideas please ask and surely some of us suffering from internal Vibrations can most likely figure out to help others like us and find some sort of healing to get rid of these. I did have a diff. Occipital nerve block few weeks ago, which my Vibrations did act differently, they came in spurts, plus mainly at my crotch, now as a woman, if it was only this area I might give up on finding help to get rid of these. But after the block wearing off now, it’s full on feet up to my higher waist buzzing. It’s terrible to go to sleep with these and wake up with them. So yes, it’s a 24/7 continuous thing. So I pray somebody has found help and getting rid of these and can share their thoughts with the rest of us. Thanks and God Bless.

I will let you know if I ever get any answers. My vibrations are not confined to any area of my body but encompass my entire body, which is awful. I have no choice but to keep looking for resolution.

I am glad you got out of healthcare.So did I.I was forced to because I got so sick.I am sure working in Healthcare during the Pandemic did not help my Health with all the stress.My one Rheumatologists ran so many tests,but I am sure more could be ran.I was looking at dermatomyositis and polymyositis.It is just hard because all my blood work is coming out normal along with the other tests.My primary did bring up that I could have a seronegative disease where it is not showing up on the tests.I am definitely at the point where I just want to know what it is.I remember it took a while to figure out I had Hashimito's disease.I went to the Best Doctor at John's Hopkins and he could not figure it out.Luckily a local Doctor figured it out from my tests and symptoms.Hopefully a neuro at NIH had seen something similar to what I have.Thankyou!

Yes, seronegative autoimmune diseases do exist. Given your Hashimoto’s (and its seronegativity—yes?), autoimmunity should be high in the differential.

Hmm, just saw an article about a combination of myelitis and myositis being induced by Covid. It’s rare, but your symptoms are rare, so maybe it’s worth a shot.

Best of luck with NIH. As I’ve said before, I hope you get answers.