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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi Robbysmom

Thank you so much for your post...you seem like such a caring and kind person.

Yes I get the twitches when I lay down to go to sleep or sometimes when I'm sitting in the car or after I've been walking a lot.I absolutely hate the way it makes me feel...to me it's like there's a wrong signal coming from somewhere....probably from the brain.

I had a brain and c-spine MRI in Dec.'06 and now I just started seeing my old neurologist who is a pretty good dr.,but he said I need to have another brain MRI and an EEG and an EMG test.So I've had all of these before,but he wants me to have them again since it's been 2 years.

He said I have really tight hamstrings and am tight all over.I don't know what he's thinking,but I'm sure I'll find out soon.....all my symptoms started in 1996 then I was dx with a hidden B12 deficiency in 2000...I got better,but then my symptoms all came back,but so much worse in Oct.'05.

Mine is a very long story......too long to tell,but I am just wondering have you ever had your B12,folic acid,MMA and homocysteine levels tested?You know even low normal B12 presents with several neurological symptoms(and I had all of them...and I thought I was surely going to die).I get B12 injections monthly,but I still have the muscle twitching so I am not sure it has anything to do with B12.

Question for you....first do you have the twitches when you're trying to fall asleep?next question:when you're waking up do you notice that they start as soon as you start to really wake up?To me mine start as soon as my brain is active after sleeping,you know?I hope I worded that right....it's so hard to explain it.

I feel so bad that you are crying so much...I have many times when I feel so hopeless that I cry me a river of tears...it's like the emotional pain is so deep it touches my soul.I hope we both get the answers we need soon.We have to believe that we can get better.Try not to worry too much...as long as your child knows he has a mom that loves him everything will work out....you just do the best that you can.

If I may ask what are your other symptoms?I often feel that I have MS too.Back in 1999 my dr. thought I had MS,but my MRI was normal except for a slight brain atrophy which was due to the low B12 and the MRI in 2006 showed no brain atrophy(which is good of course).I do have "cerebellar tonsillar ectopia" which is a 6mm cerbellum herniation....5mm and under is considered normal,but they said mine doesn't have any of the consistent characteristics of "Chiari" which is the name of it when you have a 6mm or above hind brain herniation.....so I guess I should be happy about that,but it's so confusing.........

I' not going to go into the whole Chiari thing,because it's a lot to take in,but I will be interested to know if they say you have it too when you get your brain MRI results.They say 1 in 4 person's have Chiari and most neurologists say it doesn't cause all the symptoms that people have...only headaches.....but I've heard that if the CSF is blocked it can cause symptoms...oh so hard to make sense of it all...my dr.says it's nothing to be concerned about so I guess we'll see what happens next.

I hope everything gets better for you~please post back~take care

Scout~
hi again Robbysmom:)

Well that's a whole lotta symptoms you have!I have the same ones,except for the numb spot over left eye/eye problem.

So let's see now...your symptoms could very likely be MS related,but even "low normal" B12 can mimic MS...this is what happened to me.For now you have to just wait and see what your MRI shows or doesn't show.If it doesn't show anything then I would get those B12 tests done lickety-split!:)That's be great if you only have low B12 and not MS...then you could get B12 injections andall your symptoms would be reversed,but the longer you wait...the more you are likely to get neurological damage that may be permanent.

The thing that's so weird is that you said your symptoms went away for about a year?That is a bit cionfusing...I heard MS can have relapses...so I'm not too sure about the reason you were symptom free for a year.:confused:

The Chiari thing is a real mystery...I hate even thinking about that.:(There are some other people here on the boards with Chiari...we all have our own symptoms...some are the same and some are not...every neurologist I saw (4 of them!) said my symptoms were related to low B12,but I think there's mor to it and the only drs. that acknowledge Chiari are neurosurgeons(because the neurologists told me they just want to blame people's symptoms on the Chiari whenit isn't from the Chiariat all...you know "big surgery...big bucks" for the surgeons.I hate the whole Chiari thing...I wish I didn't even know about any of it(I'm a big chicken too!...especially when it comes to "brain stuff"...hahaha:D

So I am tired of wondering why I'm such a mess.but a lot of my symptoms have gone since I have gotten B12 injections......but I'm still having other symptoms.......blah,blah,blah......I'm sure my neuro will figure it all out one of these days.

It's that awful twitching that I hate so much..I think I'd ratherhave pain instead,but I read that "fluctuating estrogens" can cause twitching...so I just wonder if mine is caused by my menopause,because that's when the twitching all started.When I get a headache thetwitching is usually gone...so I think it definately has something to do with my hormones fluctuating...I don't take any HRT and my hot flashes/night sweats are not so intense anymore...thank goodness for that:)

I think when I started peri-menopause is when my health really changed for the worse!My sister told me that when her friend started peri that her dr. thought she had lupus,then MS,but it wasn't either...they put her on hormones and all her symptoms went away.Some posters have said that MS gets worse for women when their hormones change......isn't that interesting?Well my dr. stil thinks MS is a strong possibility,but I need to get mytests done soon or my neuro will surely scold me...haha:D

Of I hope you get your results soon and I hope you don't have MS or anything serious...that'd be so wonderful...but then you'd be in for more testing(like a bunch of us here!)trying to get a dx of what we do have....so lovely isn't it though.;)

Just try to stay calm and hopefully you'll get a dx soon!

It is nice that we can share all this stuff we're going through.....yeah I wasn't fond of the MRI either,but atthat point I was just feeling calm,because I wanted a dx...hahaha....and I'm stil waiting for a dx.:)

Scout:angel:





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