Hello from Washington

[Buffheart]

I am new here. I joined because I am having muscle tics. The neuro told me it was probably RLS, but the meds he gave me aren't working. He told me that they should start working within a few days, and that was 2 weeks ago. No change. He also said something about Myoclonus, which I have been researching. He took blood, but is waiting for the results. I wish I could know exactly what I have and how to fix it

[LIZARD]

Have you had EEG and CT/MRI yet? If not, that should be the next step.


Good luck!

LIZARD :)

[Buffheart]

How much does it cost? My parents cover most of it, as I am still under the age of 20

[Buttons2]

Welcome to BT! I have had myoclonus about 10 yrs now. You need a referral to a neurologist & it will not be cheap! No idea what EEG cost my insurance but MRI's are over $2,000. So you might want to try some alternative drugs or whatever. Nothing can be done for myoclonus anyways! Doc would prescribe Klonopin most likely.

Are you able to function? Have any other strange symptom's? Myoclonus is some type of neuro problem but in all these years I've yet to find out what caused it,and it has improved ALOT from the days when I jerked all over!

PM me if you want more info.

Take care & don't fret too much.

[Buffheart]

Can myoclonus cause mental changes?

The main reason I am even having it checked out is because I have heard that it can be a symptom of something else. I just want that ruled out. I am going to go and by magnesium (sp?) pills

[Buttons2]

Well first of all you don't know yet that you even have myoclonus,and secondly there are different types. I was diagnosed with "essential mycoclonus" which means nothing! It's supposedly inherited & yet nobody in my family has it.

To answer your question,I don't really think myoclonus itself causes mental changes (with the exception of the mental anquish trying to get answers). And for me it was never physically painful except for some sore muscles after a horrid expisode of severe jerking. My entire body jerked. And I did have "triggers", stress,lights,windshield wipers,loud noise. It could happen for no apparent reason also,just be sitting in my recliner & suddenly start jerking.

I suggest you make a list of any/all strange symptom's you might be having,the duration,any triggers,etc. Neuro's usually take some time before you can get an appointment. Initial visit will be an exam & order a complete blood test (including B12),The EEG has to be scheduled as another visit w/a pro on running the test. Then the neuro gives you the results of all this & hopefully a diagnosis.

Hopes this helps.....in fact I hope you'll not fret & just wait to see if your symptoms get worse. You might want to research ataxia also

OK, I just reread your 1st post,you already have a neuro-that's good. RLS is not the same as myoclonus (you probably already have figured that out?). Are you taking Neurotin? Be sure to get a copy of your blood test results!

[Buffheart]

I am supposed to get a result sheet in the mail.

You are right, I don't know FOR SURE that I have it, but he said I probably do, and, from the research I have seen, I would agree. But then again, I am no doctor.

I have been looking some things up, and I think Essential Myoclouns is what I have. I am sure it is nothing serious

[Buttons2]

The myoclonus forum here isn't very active. You might want to join WEMOVE,it's a site for all types of movement disorders.

I assume the neuro will have you come back in to discuss your blood tests? I have a question.....are you consuming any aspartame products? Diet sodas,sugar free gum,vitamins with aspartame,Claritin??

[Buffheart]

Once or twice a week I might have one or two sticks of SF gum, and I take Children's vitamins almost everyday because I don't like swallowing those big adults pills. I hardly ever drink soda (maybe once a month)

[Buttons2]

Might try quiting both & see what happens. Children's vits might have aspartame & I have not found any gum (even w/sugar) that doesn't contain aspartame.

I have a theory about aspartame causing my myoclonus but that's just me. Google aspartame poisoning for alot of info.

[Buffheart]

I am looking for non aspartame chewable vitamins, as well as magnesium. The only reason I am still taking the vitamins I have is because it is a big jar that is about halfway gone, and I don't want to waste them by throwing them out. Plus, I have no one to give them to. I was looking at other vitamins today, but they are so much more expensive, and have fewer pills per container.

Do they have any good flavored magnesium or chewable adult vitamins that are cheap-ish?

[Buttons2]

Do you live near a health food store? You might also consider a liquid vitamin formula. I urge you to read about B12 on the vitamin thread here. I take B12 MethylCobalamin,this type of B12 breaks thru the blood/brain barrier. And it is dissolved under the tongue!

About magnesium,I need to find some myself,but ya know what? They seem to come in horse pill size!

So are you saying your current vits have aspartame in them?

[Buffheart]

My mom likes Puritans Pride, and they have liquid magnesium, but I am afraid it will taste gross. They also offer HUGE pills. I have a hard enough time taking my other, smaller, pills, so why would I take bigger ones?

Does your B12 have any taste?

Yes, they do have apartame in them, but not a lot. I wish somebody else in this house would eat them. My brother does sometimes, but not often. And I don't take them EVERYday, usually every other day or two

[Buttons2]

My B12 is cherry flavored,from Source Natural's 1MG. I'd toss those vits if I were you.

I haven't gone into all my health issues here,but just know that everything tanked @ the same time. I was diagnosed with diabetes & told to drink diet soda's,chew sugar free gum, drink shakes,etc. all had aspartame! I was consuming alot of it everyday with no idea it could be my downfall. I had such severe myoclonic jerking I actually scared my doctor!

I've been aspartame free since Jan 07 & my myoclonus has improved alot. I realize you're under 21,so won't suggest you drink wine! For some reason wine helps people with myoclonus! Maybe you could try grape juice? Just a thought.

Also,did you have any vaccinations? I had my first flu shots about the same time I began jerking. For years I've tried to find a reason & so have many other people,there must be some kind of common denominator don't ya think?

Get the B12,it can't hurt & might just help. Are you having any other "brain" issues? Memory? Speech?

[Buffheart]

Well, it may be me, but sometimes I have a hard time typing what I want, because, if I don't concentrate I start typing in random words or letters. Sometimes, if I become careless, I may start typing "the" instead of "to," or "as" instead of "it." Oftentimes I have to re-read my work several times, or else it doesn't make sense. Does everybody do that? I feel silly for saying that now. Sometimes I have problems spelling (though I used to be pretty good) and I have problems writing down the correct answers in math because I mix the numbers up

I have recently had the habit of making noises (growling, squealing, etc...), making faces, rubbing my hands, clapping and drumming on everything, when I am alone, or around people I know better. Sometimes I do it in public, but mostly in private. I don't do it on purpose, and I can't feel it coming. Sometimes I think "why did I do that?" and sometimes I think I make myself do it, by thinking about it often.

I have always been quirky, and my family knows it, so maybe this is another one of my quirks? But I don't remember doing it before this past spring.

[Buttons2]

I think you need to bring all this up with your neuro. You're too young to be having memory issues I'd say.

As for myself,there was a time when I couldn't even recall how to push a button & turn on my computer! My brain was very scrambled. I did have some lesions on my brain MRI but basically I was passed around from one doc to another & never did get any help. I hope you will have better luck!

Be sure to discuss B12 with your doc also.

[Buffheart]

Are you getting help now?

[Bahamaroot]

Well, it may be me, but sometimes I have a hard time typing what I want, because, if I don't concentrate I start typing in random words or letters. Sometimes, if I become careless, I may start typing "the" instead of "to," or "as" instead of "it." Oftentimes I have to re-read my work several times, or else it doesn't make sense. Does everybody do that? I feel silly for saying that now. Sometimes I have problems spelling (though I used to be pretty good) and I have problems writing down the correct answers in math because I mix the numbers up

I have recently had the habit of making noises (growling, squealing, etc...), making faces, rubbing my hands, clapping and drumming on everything, when I am alone, or around people I know better. Sometimes I do it in public, but mostly in private. I don't do it on purpose, and I can't feel it coming. Sometimes I think "why did I do that?" and sometimes I think I make myself do it, by thinking about it often.

I have always been quirky, and my family knows it, so maybe this is another one of my quirks? But I don't remember doing it before this past spring.Hi Buffheart and Buttons2,

I hope you don't mind me jumping in on this conversation. Everything above definately needs to mentioned to the doctor. Alot of this sounds like seizure activity to me.
Most people with a seizure disorder experiece most or all of these symptoms including memory and consentration problems. Seizures can be present in very mild forms for years and get progessively worse or not be there one day and just show up the next. And there are so many types. You may be experiencing mild Myoclonic seizures now.
I am glad to hear that you are seeing a neurologist and don't be suprised if he wants to do an EEG and MRI next which sounds like need to be done. After 20yrs of seizures, I am just starting to experience what my epileptologist is calling Myoclonic seizures in the form hiccups MANY times a day and leg twiching when trying to fall asleep.
None of this is meant to cause fear and could be way of base, I am no doctor.
Buttons, you have provided some very good information and support and I second the B12. Best wishes to you both.

[Buttons2]

Jeff, I agree about the next step being some tests. And if this neuro tries to just pass you off Buffheart-I'd get a referral to another one.

To answer your question about me,well I finally just gave up on doc's altogether. I have made alot of improvements & I accept what can't be changed. Mind you I'm almost 60 yr old so my situation is different. You are young & deserve to have your health back.

Good luck & hope the doc sees you soon for update & to go over your blood tests. By the way-from experience I suggest you call the doc office,seems to me those results should be in by now? Always remember we must be our own health advocates nowadays!

I suggest you be firm,polite & not mention the internet if you want a doc to cooperate.

[Buffheart]

Did I tell you that I am on anti-OCD/anti-depression meds? Would that affect anything?

[Buttons2]

It's possible. Why not google your meds & tic's?? I was on Zoloft @ the time my jerking began......

[Buffheart]

You might have said this already, but somebody said maybe I have dystonia

[Buttons2]

No,that wasn't me. Possibly it was Javisi? You never did say which med you are on for the tic's.....Klonopin?

[Buffheart]

I had Klonopin a few years ago for depression/OCD/anxiety stuff, but they took me off it because I had a bad experience with the other meds I was on at the time. I don't see why they couldn't put me back on just that one medicine, because I think it was the other two pills that I had a bad time with. The neuro talked about it, but he said I probably have RLS, so therefore I did not need Klonopin. Maybe he will put me on it this time? I have to call him next week because I have finished my Requip, and he said to call to see how it worked, or, in this case, didn't work. Maybe I should ask him about it

[mrsdoubtfyre]

Ionic Fizz magnesium:

http://www.pureessencelabs.com/ionic_magnesium_fizz.php

sweetened with natural flavors and stevia (no aspartame)
Stevia is now being marketed as a sweetener and is called TruVia.

This tastes good and has a little scoop included. So you can take less than
a full scoop (like I do sometimes).

Most magnesium tablets are large.

Amazon sells it, most other online places too, including iherb.com
I found mine locally at Whole Foods.