Strange neurological symptoms - myoclonic jerks

Hello @tinatoren and welcome to Mayo Clinic Connect. I am so sorry to read all of what you have been going through. To feel this way must be scary and when you don't feel like you are being taken seriously by your healthcare providers, that can only make things worse.

I have moved both of your posts into an existing discussion on this same topic, which you can find here:
- Strange neurological symptoms - myoclonic jerks: https://connect.mayoclinic.org/discussion/strange-neurological-symptoms/

Members such as @stevegrinstead @pollysparrow and @oakbourne may be able to come in and share their experience with you.

I want to start by asking if you've had any blood tests done to check, for example, your magnesium levels? Low magnesium can present as weakness, muscle cramps or twitching, or an abnormal heartbeat. There are some at home blood tests that may be available to you in Sweden in getting this done in hospital isn't an option.

Also, what have the doctors who have seen you recommended to you as next steps?

Paresthesia Internal Vibrations Moyclonic Jerks Help!
Hi. I'm desperate for some advice since I feel like I might die next time I fall asleep. Have only had some tingling in legs and seat area when having stomach pain and eating Prilosec for last couple of years. This fall I got pain that I thought was esophagus and ate Nexium 40mg for 35 days. Pain did not go away and one day I got like and electrical current between shoulder blades and suddenly my whole back started tingling. It spread up my spine and neck, behind my nose. Then I got tingling in my tongue, and lips. Next couple of days it spread to my cheeks and up to my eyebrows and front side of my body. (The back side was affected from day1) . I could not eat without terrible nausea but no vomiting.
Had extreme shortness of breath and had to lay down. When trying to sleep the horror began. As soon as I slipped into sleep I would get a dark wave of buzzing in my head and I would wake up with pulsating tingling in both neck muscles and spine, and behind my nose.
My sinuses felt like the had pressure and my gums were tingling. This was paired with total body tingling and internal vibrations in abdomen. Next days I woke up with my lips visibly trembling or my tounge visibly trembling or my jaw would spasm and my neck would jerk. Then came back jerks. Jerking head sideways or jerking back. Right hand trembling when gripping something. Right leg won't quite follow. I have been inside a living nightmare since December 2022. I've been to 2 primary docs. Didn't jerk then
and they did not take me seriously. Went to ER while jerking. They did ct without contrast only found age related vascular changes nothing else (I'm 60). Paid for mri abdomen and brain out of pocket since docs did not take me seriously. They found nothing to explain seizures.
Been trying to find a neurologist before I die but it's impossible in Sweden without referral. I've not been up more than 20 min at a time for 8 weeks.Also heart flutters and pulse is 100 or more when up) Shortness of breath got better last 3 days but every single time I fall asleep my condition deteriorates. First my lips tingle then I jerk head, back or legs . Then various myscle twitches everywhere and in face. If I manage to fall asleep I wake up with entire body tingling burning intensively including face. Horrible pressure on upper arms and thighs like they were constricted. Sweating, face flushing.
I hurry up and measure oxigen it's 96 percent. I've had no loss of skin sensation, no loss of reflexes or muscle strength so far except my hand and face twitch when tensing muscles. A heavy feeling in the back of my head like a lump and pressure behind sinuses. Pain if I press the area between nose and forehead. No congestion but intense ringing in ears. If I turn head side to side quickly it's like a dull sound, pressure and things get a lot worse. Constant body tingling and internal vibrations but when I sleep it gets so intense and burning it's like someone has taken a belt and cut off bloodsupply to upper arms, thighs and face while the rest of the body has tingling.
My lips tremble when chewing.
My whole chest vibrates when I speak and I get nauseated.
So my brain shuts down somehow when I sleep and Im so terribly afraid of these seizures and paresthesias. It started like guillain Barre or tranverse myelitis but since I have no weekness and no loss of reflexes and crp is 5 so no inflammation markers that doesn't match either. I can't have brain or spinal inflammation can I? even though that's what it feels like since I have this preaussure in my head. Or vascultis that attacks sinuses but crp is normal. Please does anybody know what kind of brain injury gets worse when you sleep. I've just layed here for 9 weeks trying to get help but Healthcare system is terrible in Sweden and I can't access a neorogist. I'm just laying here waiting to either die or get bad enough that it shows to ambulance staff. Ive called 3 times since December they have refused to take me in and when a neighbor took me to ER while jerking they still sent me home after ct scan. I can't get them to understand that the damage happens when I sleep and I honestly think I will die soon if I don't get help. It's getting harder to come back to consciousness after sleeping.

Hi @tinatoren. Please dont give up. What you’re describing so many of us have or still are experiencing with a myriad of other possible symptoms. The information provided on this website can be invaluable and help pursuing other avenues of care that best fit your circumstances. I recently had sleep study that verified many OSA symptoms that started year ago with my covid and has helped explain many daytime symptoms to my various healthcare providers who could not “see” what I have been trying to explain. Hope this helped!🙂

Thanks for your encouragement! I'm trying to hang in there but it is so hard. I guess it is just to try and get through the next hour and then the next, hoping for those couple of descent hours here and there when I have the strength to write letters to best describe my symptoms to doctors and to keep fighting to get access to a neurologist somewhere.

Hello @tinatoren and welcome to Mayo Clinic Connect. I am so sorry to read all of what you have been going through. To feel this way must be scary and when you don't feel like you are being taken seriously by your healthcare providers, that can only make things worse.

I have moved both of your posts into an existing discussion on this same topic, which you can find here:
- Strange neurological symptoms - myoclonic jerks: https://connect.mayoclinic.org/discussion/strange-neurological-symptoms/

Members such as @stevegrinstead @pollysparrow and @oakbourne may be able to come in and share their experience with you.

I want to start by asking if you've had any blood tests done to check, for example, your magnesium levels? Low magnesium can present as weakness, muscle cramps or twitching, or an abnormal heartbeat. There are some at home blood tests that may be available to you in Sweden in getting this done in hospital isn't an option.

Also, what have the doctors who have seen you recommended to you as next steps?