New Symptom. Myoclonus/leg Jerking. Hint To Primary Condition?

[trappedat20]

So last night around 1 am my right leg started jerking/kicking every 20-30 seconds uncontrollably. This lasted until 7 AM! Only then was I able to fall asleep.for about an hour before my hubbys alarm went of for work. I never fell back asleep unfortunately. I started crying though because I was SO tired and it would just not quit and I couldn't fall asleep with it doing that. I kicked my husband several times until we eventually moved far enough away from each other so it wouldn't kick him. I looked it up and it's called myoclonus. To make sure that was what I was experiencing I looked it up on youtube and I came across this video

Mine were exactly like that. Same movement, same leg, even about the same distance apart. The only thing was mine were a bit more intense but besides that they were the same thing.

I'm not sure if this symptom is here to say but every new symptom I get likes to stick around. I really hope it doesn't come back but I have a very good feeling it will. I remember thinking this about my seizures and now I get a few a week. Once a symptom appears for me it doesn't disappear. From what I know this isn't part of dysautonomia. Could this be a hint towards my primary condition? I know I've had a lot of neuromuscular problems lately but I kinda brushed it off as part of dysautonomia and now I'm wondering if that were a mistake. I experience numbness and tingling in my left side of my body more often lately, my muscles are getting weaker and weaker and I've been doing everything right for weightlifting but my strength is going down and down. My husband is SUPER into body building too and has been saying that something is seriously wrong. I need his help to take my sports bra off or any kind of tight shirt. I get muscle spasms in my legs occasionally, but not often. My doctor thought he noticed myotonia in my hands a couple months ago but we never really looked into it but thought it was worth a mention. I tend to have problems with grasping things but nothing that is overly noticeable. None of this stuff is enough to appear when they do those little neurological tests where you press your feet against their hands and grasp their hands and stuff because it's not that bad, it's more that it's getting progressively worse. Probably leaving something out but you get the picture.

Thoughts? Ideas? I feel like I've been chasing this primary cause but its really hard because dysautonomia has a laundry list of symptoms so a lot of things can just be brushed off as part of the dysautonomia. Does it sound like my primary condition could be neuromuscular or something? Another weird thing is I have a VERY strong craving for creatine powder. I crave it like 30 times a day although I don't allow myself to have it but once a day and none at the moment while we're looking stuff up. It creates this good feeling while I'm eating it that I can't explain and makes me feel a little better after only a few days of taking it. This lead my husband to believe it could be mitochondrial disease. I don't know where my new symptom fits with that though and I don't know what other conditions that are seen with both myonclonus and dysautonomia. Any help would be appreciated. Thankyou

EDIT: Well, looks like the symptom is definitely here to stay. It started up again at midnight tonight. This seems to be around the time it likes to start up. I wasn't in bed/relaxing or anything either it just seems like it likes to start up between 12-1 regardless of what I'm doing.

[gjensen]

I am getting them, but I am not getting them consistently like that. I will get a couple in succession out of no where. Just every now and then. I have wondered what it meant.

[Katybug]

MakeMeErised,

Have you found and scheduled an appointment with someone who specializes in dysautonomia? I know you have seen a basic neurologist and cardiologist but they generally are not proficient in rare diseases. I really think you will only find answers by finding a mre specialized physician. Your case is clearly getting more complicated and severe and I urge you to find either an dysautonomia specialist or a neurologist that specializes in movement disorders.

[trappedat20]

I don't want to sound stupid but what's a mre specialist lol? I've looked up pots specialists and specialists for dysautonomia in my area but since I live 20 minutes from Vanderbilt they all work there. My neurologist is working on getting me in there but from what I read it takes like a year and with how fast things are progressing I can't wait a year for answers. I'm not sure what kind of specialist I should seek at this point that will help me find the underlying cause of my dysautonomia so if you have any ideas please let me know. I would love to find a doctor who knows a lot about dysautonomia and the difference causes so we could search for my cause.

[IceLizard]

Hi, I think Katybug meant "finding a more specialized physician." The mre appears to be a typo. If you are are progressing too quickly and the dysautonomia doctors on the dinet.org list take too long to see, you might try scheduling a phone consultation with Dr. Svetlana Blitshteyn, She is a neurologist specializing in dysautonomia who has good patient reviews. She can give you and your physicians advice about what to do next (for a fee, of course).

See here: http://drblitshteyn.com/

I know others have used her before, you might ask around and see about other peoples' experiences. I considered doing a phone consult, but I just don't have the money right now and I am currently working with excellent local doctors that insurance covers.

Best wishes!

[Alison]

I'm jerky too. I noticed that low potassium can cause this. I had a blood test for my electrolytes yesterday, don't know the result yet. My body started jerking after I increased my salt intake, I was wondering if this has interfered wtih my potassium level - I think I heard that sodium can do this? I also noticed that problems with your parathyroid can make you twitchy and lightheaded?

[looneymom]

This is one of the symptoms my son has and our cardiologist does not know what is causing it. I will share our story and past experience and hope that something may help with your situation. My son was so bad at one time, he would role constantly back and forth and lost the ability to sit up. Our cardiologist ran a test to check for dopamine and serotinon levels. The levels were unreportable and my son D Levels were also low. I found an amino acid supplement at GNC and started giving it to him. Three weeks later his rolling stopped and he was able to sit up. His tremors, shaking, and hard jerking started 3 months later after an ear infection. At that time, they would come and go. However, after my son had the flu last year, the tremors, shaking, and jerking have came back to stay. Sometimes I see hard jerking, somtimes his ankle is moving back and forth and sometimes it's his toes. Exercising is impossible to do because it makes all of it worse. As far as strength goes, my son has probably lost some but he still has the ability to transfer in and out of a wheel chair and he can still sit up by himself. At this time, he does get breaks from it, but in the begining after the flu, it was constant, all day and night. He would literally be tired and exhusted from the shaking. It also cause a great deal of pain inhis body. I kept him on a high protein amino acid shake and gave supplements that would boost his immune system. In the meantime our cardiologsit kept running test to try and figure out what was causing this.

Have you been sick with mono or any other viruses? Last December, I was able to get my son to an immunologist and I found out he had a high viral load of mycoplasma p. Most likely this has been in his system the last 3 years or more. Through other testing, my son also has anti-neurantibodies on the brain. The mycoplama P bacteria can cause this to happen. It creates an autoimmune problem in the body. So at this time I am waiting on a blood test to see if 16 weeks of antibodies has helped lower the mycoplasma p bacteria. Too much of this stuff in the body can cause neuromuscular problems. So at this time, we are trying to get the bacteria out of his system. My son had walking p before his POTS diagnosi. His doctor seem to think the the bacteria that cause the walking p., was also responsible for causing his POTS. If you think your condition is being caused a virus then an immunologist might be the person to go see. If you can find a neurologist that specializes in neuromusclar problems, they might be able to help you as well.

Wish you the best in finding a doctor that can help. My son's tremors have not gone away but they seem to be less. I am still giving him an amino acid supplement, and a few other supplements to help with the tremors. Have you been checked for for a choline or GABA defiency? These can cause this type of problem with nerve signaling.

[Katybug]

Yes. I meant more not mre.

[trappedat20]

Update: Last night my twitches started at midnight and my husband gave me L-Dopa because we read somewhere about low dopamine levels and twitches but it didn't help. Around 1:30 am we got really fed up and my husband gave me a valium. I don't know if it stopped the twitches or just knocked me out but I don't care lol. I was already soooo tired from staying up all night the night before with these twitches and I really needed my sleep last night. I wasn't about to stay up all night again with them. When they started my husband and I tried a few things to see how I responded. I tried walking on it and that only helped while I was walking. The second I sat down again it started. So, that wasn't very useful considering I can't stand up for long anyways. I could still feel some electrical buildup but not as much as when I was sitting and it didn't twitch when I was walking. Granted, considering the moment I sat down it started again this is not helpful at all. I tried flexing my foot and leg and that helped a little while I was doing it, but it was less effective than the walking which already wasn't effective. We tried to have my husband massage that area and that was def. the wrong thing to do. Apparently my leg doesn't like to be touched when it's like that or else it will just twitch uncontrollably without even the 20-30 second breaks I normally get. The electrical activity feeling is much worse when it's being touched too. This is the best way I know how to explain them. It feels like there is a lot of electrical activity that builds up for about 10 seconds and than it "releases" by twitching/kicking. 20-30 seconds later it starts up again. Then it likes to repeatedly do this for hours. It had nothing to do with resting either. The first night I got them I was laying down trying to go to sleep, but last night I was still up and on my computer when it started. It has happened the past 2 nights so I can't really form a pattern but it started at 1am the first night and midnight the second night so maybe it just likes that time lol.

@Katybug Oh, okay. I'm sorry. I feel stupid now lol. I have no idea what kind of specialist to see atm so when I saw that I wanted to look it up to see if it would help me.

@IceLizard thanks for the suggestion but we're really poor atm too. I will keep that in mind thought if we try another specialist and it doesn't work out. I guess if I can't find a specialist who knows what they are talking about we'll have to find the money someway. Hopefully the next specialist I see has some kind of idea what they are talking about though. Hopefully.

@Alison No, my electrolytes and thyroid and everything were checked just a few weeks ago when I was in the hospital and everything came out perfect. My diet hasn't changed either.

@looneymom It's so funny you say this. Check my update: at the top of this reply. We read something about low dopamine on a few of that one youtubers comments. I have ADHD-Combined type so we thought it made sense and tried L-Dopa last night but it didn't help. You said it took 3 weeks though? Maybe I should continue it for a few weeks and see if anything changes? As far as the GABA deficiency goes my husband had me take a valium last night and I'm not sure if it stopped the twitches or just knocked me out (I was already tired to begin with from not sleeping the night before so who knows lol.) to the point I wasn't even aware if I was having them lol. I'm turning 21 next month and I got shingles twice when I was 12 and when I was 16. I had strep when I was 18. Besides that I've only had common colds though. The dysautonomia started about a year ago and I didn't have anything around the time I got sick. I really hope everything works out for your son. That sounds awful. Good luck on everything.

[dkd]

Have you called your neurologist to ask them about it???

I do have muscle twitching off and on. Each body part that it affects seems to last about two weeks. I've had them in my back, eyelids, calf, thigh, different places, even in my groin area (that's really weird too ). Yesterday it started in my right hand pinky finger. It is actually moving where I can see it. Usually it's a muscle that's pretty deep so I don't see it, only feel it. It comes and goes throughout the day. I was going to go to the doctor when it was in my back and then suddenly it just quit. I had a pulmonary test last year that was "suggestive of neuromuscular disease" . I was sent to a consulting neurologist and he did not think I had anything neuromuscular going on though.

Please do call your neuro and see if they have any ideas or can get you in to see a specialist any sooner.

[IceLizard]

I am on Librium for my tremors. It's a small enough dose that it does not knock me out, mostly just keeps me from being shaky. Valium and Librium are both Benzodiazepines which have anti-convulsant properties.

[trappedat20]

@dkd I'm really not sure how to know if it's neuromuscular or not. It def. feels that way because of how everything feels but who even knows. Today it feels like everything is numb and tingling. Normally I only experience this in my left foot and or left hand but today even my face is experiencing it which is odd to me. I'm trying to get a hold of my husband to see if he can call the neurologist. I'm going to go look up a pulmonary test and see what that is.

@IceLizard Hmm that's very interesting. I think that the next time this happens I will try the Valium again to see if it actually helped or if it just knocked me out, but I won't go to sleep this time. If it actually helped I'll have to ask my neurologist about librium. Ty

[looneymom]

Tyler was never put on L-Doppa. I wanted to try it with him, but his doctors said it would do more harm than good. I've learned that the urine test is a much better test for measuring neurotransmitters. Tyler's last testing showed that his dopamine levels were just 6 points above the normal range. but his GABA was low and out of range. His Gluatamate is high and some of it should be converting into the GABA. So he may have a methlation pathway blocked. I am waiting on the results of his 23 and Me testing. From research, I have learned that low GABA and Choline can cause these types of problems. A neurologist should be able to check for these defiencies.

Our immunologist told us to try GABA to see if it would calm the tremors but it just made Tyler too sleepy in the day time. I did not see any improvement with it and did try this supplement with him for about 3 weeks. I started supplementing Tyler with Choline this last Monday because the mycoplasma bacteria likes to rob this nutrient from the human host. Choline is usually found in a B-complex and Tyler's supplement has very little in it. I hope this supplement will get the tremors and shaking to stop.

[gjensen]

Right now, I am attributing mine to sympathetic over activity, LOL.

I did have the consult with the doctor that Ice Lizard suggested. I think that it will benefit me, and it was refreshing to discus this with someone that understood this. I intend to discuss this with her a couple times after the Mayo trip. I am glad that I did it. Her report for my local doctors will be the biggest help.

[AllAboutPeace]

Wow, good idea to post that YouTube video! I never would have said I experienced this, but as soon as I saw it, I recognized it. I have it sporadically.

MakeMeErised - is it possible that your worsening symptoms have something to do with your chiropractic treatments? It seems from your posts that things got much worse after that. I could be totally wrong about that, but I thought it was worth mentioning - just in case you haven't already ruled it out. Wondering if possibly with the adjustments, there is pressure where there shouldn't be or something like that (??).

I hope you are able to find some answers soon.

[trappedat20]

@Allaboutpeace nah I stopped that a month ago. It was progressing before too but now the new symptoms that appear are things people can see so for some reason it seems like it's progressing faster now than it was a few months ago. Idk if that makes sense or not lol. I'm really glad I saw it because I sounded stupid trying to explain it to people before lol. Good thinking though.

@gjensen that is so great. I really hope everything works out for you. Good luck!

@looneymom that is interesting. I'll have to keep in mind to ask for that. I got really excited at the word urine test lol. Most of the tests I've had lately are the unpleasant ones lol

[TCP]

These myoclonus jerks seem to be linked. When my nervous system crashed in 2007, I was jerking my limbs day and night for weeks. Sometimes very regularly and at other times hours in between. The neurologists weren't too concerned about them. Eventually over the months mine faded and I just get them at night. Half the brain is falling asleep and the other half is awake and that side wakes the other side up and results in the jerk of limbs or whole body.

[trappedat20]

That's a little upsetting that the neurologist wasn't too concerned about it. I haven't seen my neurologist since it started but I hope he doesn't just make me deal with it or anything. It's so hard to see what's linked to the dysautonomia and what's not.

[TCP]

I think the reason A&E and the team of neurologists I saw don't worry about it is that it's linked to anxiety and stress and I know mine get worse when I am stressing about anything.

[trappedat20]

For some reason mine look like I'm faking it I tried to record them last night and it looks like I could be doing it myself so I don't want to show the doctor. I'm obviously not though because I hate them so much. They've left me in tears almost every night since they started. I can't be as close to my husband anymore because I've kicked him several times and now we have to keep our distance when they start Mine don't really look like the girls in that video anymore. Mine are a lot more abrupt and harsh. It looks more like I'm slamming my leg down in a weird twitch like motion. It doesn't appear as rhythmic as it did the first 2 nights either. Now I'll sometimes have them for a certain amount of time straight and than I'll have a break and than it starts up again. For some reason twice it made me blurt stuff out too. Only twice though but it made me say ow one time even though I wasn't in pain and it made me just make a noise one time.

[DADofPotsSon]

I am 60 years old and have had this off and on since in my 20's. I have tried the L-dopa with no luck, but do have some improvement with Ibuprofen. I have found that over doing it and over exertion seems to aggravate it. Mine is most always at night and mostly the right leg, and it can ruin a good night sleep. I am very cautious with chiropractors as they also can cause it to flare up too. I have always been of the opinion that it is more electro spinal related and not brain related. If I treat my back/spine/chord with care it seems to disappear for a while. I have had it as bad as the girl in the video!

DADofPotsSon

[Raisin]

Do you think it might have anything to do with restless leg syndrome? I have that but my legs feel caffeined at night. I know it can occur in different degrees and it can last all day for some folks. I take Gabapentin lowwwww dose to help that and it works for me. I know some folks don't do well on that though. I am equally curious about this topic as I have a muscle in my back that freaks rather violently when it is relaxed....ergo I would call it a myoclonic jerk or axial myoclonus. This does get worse with anxiety but it has been with me every night for a year and a half sooooooo I can't say it is purely anxiety related. Let us know what the docs say!

[Alison]

I've been wondering if my jerks are in some way related to Tourette's syndrome. You say you called out, that also happens in Tourette's.

[TCP]

The jerks I experienced when the autonomic dysfunction kicked in were extreme. My legs and arms would lash out and even my head. I was also experiencing these symptoms day and night. During the day my legs would shoot up in the air or my fingers would flick up. I also had repetitive head jerking at night and bite my tongue. Epilepsy was ruled out. All of these flair up when I am anxious and have certainly abated since 2007. I found that when I understood that they were benign I relaxed more.

I was sent to casualty 7 times in one month when my BP crashed and I had two week long stays. One girl I was next too had extreme jerking and leg and head thrashing. Hers were caused by anxiety/stress.

[trappedat20]

Yesterday mine started up in the day time too. So now it seems to occur more frequently and in spurts throughout the day rather than all at once. I don't think it's related to anxiety since I don't have any anxiety. Alison, my husband actually thinks it's actually tics so it's funny you say that. I also don't think it's related to restless leg syndrome as this has started up in the day time too now.

Sorry if my responses haven't been as detailed as they normally are. I'm at a point where I almost feel like giving up on searching for the primary cause. Doctors don't seem to even be looking and I'm tired of trying to find it myself when there are endless possiblities. I just wish they would stop being so scared to prescribe me stuff and at least try to deal with my symptoms. I don't know how everyone whose had this for years deals. I've been sick for 1 year and I feel like I'm going absolutely insane and I can't take it anymore.