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Angie679

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Hi; I am new to this site and I have been so worried about this disease. For the past 8 months I have had pretty much ongoing frequent twitching mostly in my calves, but also in various areas such as arms, abdomen area, sometimes eye twitching. I have a long history of working myself up sometimes to thinking I have something wrong, when after all the test results have come back normal, symptoms seem to just go away. My mother in law was diagnosed with ALS this past July, 2007, while staying with us, and it was right after she left that I developed this annoying twitching. It is not a continuous twitch in one spot, but more like a twitch or two in my calf that I can see and feel, and then not again for alittle while, then someplace else. I went to see a neuro in August, and he felt that it might be just nerves, or BFS, but recommended I have an emg anyway. I am embarrassed and ashamed to say that I canceled the appointment because I am so scared. My family thinks I'm crazy, but these twitches are real and this worry has consumed me. I was told that twitching without weakness/atrophy for longer than 7 or 8 months probably meant that it is benign and not ALS, and if that's the case maybe I should relax alittle. I don't have any other symptoms other than twitching... If anyone has any suggestions, please reply.
 

Akka

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Hi Angie,
Unfortunately I do not know what you have, but I have quite similar symtoms. But I do not know either what I have.
In fact, for me it all started a year ago with benumbed hands at night. Just that for many months. And very rare facsiculations or twiches, whatever the difference would be...Anyway, since nearly a month I have a lot of facsiculations and twiches ( I do not know the difference). I have them in my back muscles, in feet, and hands, exactly as you say, like running from a place to another. I also have cold sensations and shiver, tremor.
I had someone in my environment that had als. I also asked people arounde here what do they think about a virus. I also asked at the Vancouver ALS Clinic, but never got any answer.
Also, my family and some doctors tell me I am crazy when I tell them I fear this could be als that was transmitted by a virus and that I very easily took (I drinked fron the same bottle with the wife of the person that had als, but also cut at a finger in that environment and we worked with same papers, phone, computer, etc). In my theory the wife could only carry the hipothetic virus for the moment. But this is only what I suppose. Believe me, I sincerely prefer to be crazy, than to be right...I am also very scared because my mother is telling me she also has benumbness in her hands at night and now her hands -palms- are inflamated. But she doesn't believe a second and finds 100 other motivations for what she has...
I feel incapable to do anything to find out if my theory is right or not? Where on earth can I go and tell them: look I think I have a virus that has not been discovered by science yet and that leads to als? They will just say I am crazy, bcs no one identified what I have, for the time, only nasty symptoms.
I do not want to scare u, but I think we share the same concern. I will try to have some proper blooed testing, but I do not know how can I check my theory...I whish so much to be wrong...
 

Akka

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I also was very scared when it started, I was torturing myself with fers. And that I said, that the least I can do is to see what I have and use all my energy to fight it. Si I decided to do all the tests and see all the doctors, like neurologists, endocrinologists, reumatologists, etc, untill I find an intelligent one to put a diagnosis. And then I will see what to do. But I also think that it might be something that I can cure, and it would be pitty to loose time if this is the case. So, get some courage and go do the tests.
I was consulted by severeal neurologists, bcs I don't trust them veryu musc, everything appears to be ok. I had 4 EMG, to all the neurologists in Bucharest that do that, and they are all perfect. So, on ther opinion I have nothing...I also will have a magnetic resonance test, and I also want to have a muscular biopsia. And also endocrinologic tests. I also went to a rheumatologist, he sais I am om. I also had blooed tests. I vahe the lymfocites is little high and the Immunogram G IgG. I also had a electroencephalogram, and it seems that I am too agitated and can nor relax...how can I relax if this is torturing me since a year?...
My advice is to go to all the tests. Have also some immunity tests and please, let me know what it says.
Good courage
 

Angie679

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Hi Akka;

Thanks for your reply. I should have gone on further to say that I am 40 years old and a couple of years ago I experienced many nights of waking up with numbness in hands and sometimes feet. I also frequently woke up with extreme dizziness. This only happened during the night. But the room would be spinning and it would take several minutes for it to stop. The numbness in my fingers/hands/feet seemed random; In other words, I was not sleeping on them. I did see a neuro then for fear of MS, but my MRI and strength/balance tests showed no evidence of anything serious. I do not know if ALS could be caused from a virus, it is possible I suppose. But I found your reply interesting because I do share many of your symptoms. My neuro felt that based on my balance/strength/mobility, at this time he did not feel it was imperative to proceed with EMG testing. Plus, he could probably tell I had hypercondriac/anxiety issues. I swear my mother in law, who lives in LV, was diagnosed in June at my house, and showed me her twitching in her upper arms, then low and behold my mind/body become consumed with her disease and I take it on. I should just go ahead and make an appointment to have these tests done, but I have to say that I am so freaked out by this, I don't have the inner strength to go through with it. Another symptom I seem to share with you is this sensitivity to cold. I am always cold and always have goosebumps on my legs. Or else, my legs feel like they have been in a freezer for awhile then are taken out to be defrosted. That freezer burn feeling...My family thinks I am crazy with my symptoms and worries. I hate living like this...on the other hand, I really enjoy every minute of my day as best I can, cause I keep thinking my days are numbered. How depressing! Please keep in touch and good luck to you!
 

wright

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Hi Angie

I think just about everyone on here is going to tell you to simply calm down and accept the fact that you don't have ALS. It seems very coincidental that you started to twitch . . . or noticed that you were twitching . . . after your mother-in-law showed you her twitching. Certainly I can't tell you with 100% certainty that you don't have ALS, but I find it HIGHLY unlikely that you do, if all you're presenting with is twitching . . . which by the way . . . is completely normal. I don't know anyone that doesn't twitch. Most everyone does: some notice it more than others . . . and you are now noticing it because of your fears of ALS. Just so you know: anxiety and lack of sleep make twitching worse . . . or can even start them. Get off of the internet and forget about ALS. I bet you that your twitching will decrease and you most likely will stop noticing they're even there. Again, it's normal that you have them, it's just that you are more aware that they are present. Enjoy your weekend.
 

Akka

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Wright, of course I also hope and would prefer you to be right. I also would prefer to be crazy and have fake symtoms, that I induced to myself....but really, I don't believe this.
I believe we all have better things to do in life that mimating or inducing other people's diseases...
That,s why the best thing is to have the tests, even if they don't show big deal: for example all the tests I had for the moment seem to be ok, but I fell very sick, I don't feel healthy at all. I have something, and this is not my imagination.

Angie, I think we have a lot of similar symptoms. My cold sensations are not in feet, but in my back, were I also started to have a lot of fasciculation, and my back is pulsating. In fact my body is pulsating all over, in my feet and even in hands...I fell my back prozen, and like cold waves are passing through it. I can assure I believe you and I have the same problem with people saying I imagine thins.
I do not say that this is als, there are so many dosease that look like that, maybe it s something different that cand be cured.
For example, I have been told that this can also be caused by a hiperactivity of the brain, that's why I had a EEC to show brain's actitity, and it seems that I do not relax at all, and this can also give these sensations. But, of course, no one can guarantee that it is only that.
At the same time, my mother has the same problem with hands benumbed at night and painfull, and now here hands are very inflamated...wich is strongly make me think at that virus theory.
Keep in touch.
 

Angie679

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Wright

I wanted to say thank you for your reply and I certainly hope that you are right. I wish I didn't worry so much and wasn't affected by anxiety as I am, but I have a 9 year old son who I am totally responsible for and I tend to worry about things. I also lost my brother a couple of years ago in an accident and it really changed me. I am somewhat ashamed of my anxiety and I know that I really should just be grateful for all that I have and relax and enjoy every minute of every day, but you can't change who you are and how you think. It helped me to read your reply and I will try my best to take your advice and just ignore my annoying twitching. I am sorry if you are struggling with this disease in any way. I do hope life treats you well.
 

northerngirl

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Hi, If the twitching is driving you nuts try googling magnesium deficiency. Might be that simple.
 

CindyM

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you can't change who you are and how you think.

I disagree. I have managed to retrain my thinking several times. IT is a skill that I am still developing...
 

Angie679

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Magnesium deficiency reply

My doctor checked magnesium levels in bloodwork and that is not deficient. He also checked something else related to muscle enzymes and said that that was normal too. No breakdown of muscle enzymes. I have read in different places on this site where ALS twitching is described as "rolling twitches", does anyone know what this means? My muscles feel achey sometimes but I have no trouble with tripping, falling, etc. My twitches tend to be varied in different parts of body and when I feel them it mostly occurs once as a single twitch then I don't feel it again in that spot for awhile or ever. Is ALS twitching mostly multiple twitching in one spot for a period of time? I wish I was not so aware of every twitch that occurs, but sometimes it is someone little inside my skin trying to poke itself out. It's disturbing to me. Does anyone know in general when one can relax and not worry about the possibility of ALS when weakness has not presented itself along with twitching? Thanks for all your support and knowledge. This website is such a wonderful and resourceful place to share and everyone is so very helpful in their own way. Thanks!
 

wright

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Hello again Angie

If your twitching is occuring in more or less random spots on your body, you're fine. Bodywide twitches are indicative of more advanced stages of ALS when the entire body is denervating / reinnervating. Initially, if twitching has anything to do with ALS, the twitches tend to be in a localized area. On top of that, you don't have any weakness or atrophy. Your muscles are simply twitching because of your anxiety level . . . and you more or less "kick-started" them and it will probably take some time for them to stop. Go get some sleep and accept that fact that you don't have ALS. Twitching alone is not even close to being a diagnosis. I hope that helps you. Take care.
 

mamaoftwo

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Hi Wright - what is considered "advanced stages of the disease"? I have had bodywide twitching since this started and have never been told that this is indicative of another condition rather than ALS. I am curious as to where this information came from. I have read so much about fasics and the only rule I can find is that there don't seem to be any rules! If bodywide twitching is a sure fire way to distinguish ALS from BFS, then someone ought to dig out this data and post it for the benefit of all the people on the BFS boards going crazy with ALS fears.
 

hopingforcure

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I think what Wright was saying, is by the time one has body wide twitiching, you would have well been diagnosed. and have some muscles that would be quite unusuable.
I agree with that, it always goes back to this, without clinincal weakness and atrophy... NO ALS...
 

Angie679

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Dear Wright;

Thank you again for your words of wisdom and reassurance. I am thankful to you because when you start stressing out and worrying about something you lose the ability to reason and I have found the very thing you are worried about snowballs and it's difficult to get out of it. Since my mother in law was diagnosed last July I have shared her devastation to the point of sharing her physical symptoms as well. I don't ever remember having noticeable twitching prior to her disease being discovered. As you know, the human body is an amazing thing, and your mind is so powerful and remarkable. I just can't believe that I can be so self destructing. I hope you are right and I think of your words whenever I start feeling the twitching and stressing about it. Thanks again, I wish you well.

Angie
 
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