Things that move in your body?

I’m sorry you’re having weird movements that concern you. Neurological stuff can be so weird. Could the movement you’re experiencing be muscle twitches? I have a rare hereditary neuropathy and one of the issues I have is with fasciculations (muscle twitches). I’ll have at least 50 at a time in my legs and feet and they go on for hours. This is a regular occurrence. I remember when my son was young and I had shorts on he told me it looked like bugs were crawling under my skin. It feels that way too. I also get random twitches on my face when under my eyes, my eyelids and near my mouth, my hands and other places. I remember having eye twitches as a kid. The massive leg twitches started about 40 years ago in my 20s.

There are a lot of people on this platform that talk about benign fasciculation syndrome (BFS). You might want to search for that and read how others describe it. I hope you find answers soon.

@rnlorena
Definitely get MRIs of your head and neck to see if anything shows for compressed blood vessels or spinal cord/nerve roots.

Small fiber neuropathy (I have it, too) can mess with your blood pressure. I wonder if the increase in your blood pressure puts pressure on nerves that causes the feeling of movement?

EMGs only detect peripheral nerve/muscle conditions and does not really detect anything tied to small fiber neuropathy or the brain/spinal cord. They can detect if a spinal nerve root is pinched and disrupting communications to your limb muscles (radiculopathy) or nerve compression/injuries in limbs like carpal tunnel. I’m not sure if having an EMG will help get you more answers.

It could be Trigeminal Nerve damage. I have this also after a brain stem stroke on my left Medulla/Cerebellum 2017.

I am gonna re write my paragraph. I have been really freaked out by these new things that have happened. Since 2021 I have had pin pricks. These things that I have now are bizarre to me. I re read what I wrote. The part about something moving up to my right eye. Let me re phrase that. I can say that all of a sudden I felt that something was right underneath my right eye. I definitely felt it. It was like it was sitting there. As far as the blood pressure being high it was. I took it as soon as I felt that underneath my eye. It was 180/90. I took a Clonidine and went to the ER. They found nothing. My blood pressures up till then were good. That was on March 13th. My BP’s after have also been good. I saw my cardiologist on Monday and made her aware of those issues. April 15th after I got the call from the neurology office to make sure I did labs for the MRI I had done today I felt something under my left eye. By the time I got to Quest lab and sat for a bit it was underneath my right eye. So together it was under both eyes. I was prepared. I took my BP stuff and my clonidine with me. I took care of my blood pressure. So today I brought My bag with me with my BP stuff and my clonidine. Today it was on the lower then the the upper part of my right eye. It is just sitting there. Not painful but I can tell it’s there. I am keeping an eye on my blood pressure. I called Jacksonville Mayo and it could be a year to see a neurologist. So I am planning on checking Mayo Rochester. Also Houston because my sister who use to live there said they have lots of hospitals and doctors. I am determined now more than ever. I will not take a pill thrown at me till I hear some things about what is actually happening to me. . I went to my regular Doctor and he doesn’t know much about me yet. He said the names of four pills he could give me. I said NO! I won’t go out now without taking my bag with my BP stuff with me. I don’t mind taking pills but I want to hear some information first. When I went to the hospital in February because of pressure in my head and blurriness and then was discharged home after that I did have feelings of things moving in my head. And it was not pain. Some of these things are hard to describe. I have a small composition book and I am writing in it now if something happens. I think that will help me better than trying to remember. I have read about small nerve fiber and I saw that it can affect many of your systems. I do now remember having some fasciculations something else I need to write down. I really appreciate everyone who writes back and tells their stories or knowledge of things. I need to be more thoughtful of describing things that have happened to me. I am on the page of thinking that my small nerve fiber is deciding to show more things. I have had at least two EMG’s and nothing came of those. When I saw my cardiologist we talked about some of the things that happened to me. I told her I felt labeled with a TIA. She asked me how long I thought it lasted and the symptoms. I told her it was about a minute or two and it went away. No deficits. She doesn’t think it’s a TIA. It will be a question now of what the Neurologists think of my MRI of the head and neck with and without contrast. I get crazy upset when I read my report that a DOCTOR reads on a daily basis then your DOCTOR comes long and doesn’t agree with the person who reads them everyday for years and years. I do remember also that one of my eyes would twitch every now and then. That was before DX of small nerve fiber.

@barbjowilliams Thank you for your reply. It wasn’t painful around my eye. It just showed up there. Everything I have had so far with small nerve fiber has been bizarre. I probably wouldn’t call it textbook.

I've had facial sensation of like bugs crawling under my skin (again just Trigeminal Neuralgia Nerve issues) also sharp facial/head pain. Because this Nerve and vagus nerve was in the direct path of stroke among other issues...

@rnlorena
I can feel your stress and frustration. Because fasciculations come and go and tend to happen most when muscles are at rest, the EMGs can easily miss them. You lie on the table after just moving all your muscles.

I can understand why you don’t want to take meds without a diagnosis.

You’re on the right track keeping a journal describing symptoms. May I suggest adding what you ate and drank on the day of symptoms to see if there is a pattern? I know caffeine and chocolate can make my fasciculations much worse even many hours later.

Is your blood pressure high only when you feel the sensations? Do you only take it when you feel the sensations? My mom’s doctor told her to take her blood pressure once a day first thing in the morning for a couple of weeks to get a true picture of how it was running. It is high if she takes it during a panic attack. Do you take a daily blood pressure med?

I’ve had twitches around my face and eyes and my ophthalmologist told me it was normally due to stress and would resolve. Mine lasted a few months and did resolve. It was very annoying.

@celia16when the things came around my eyes I took my blood pressure and it was up. My blood pressure has been great with what my cardiologist gave me. I take two pills in the am and one in the pm. Besides the eyes I am now having a sensation in my head at the time I am writing this. I am keeping an eye on my Blood pressure for sure. Between these weird things happening my blood pressure is really good.

Interesting. Is it possible the sensation bothers you, thus your blood pressure goes up? I hope you can get some satisfactory answers about the sensations.