Desperate for Help with Twitching

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Natalie2.Natalie3

New member
Hello, this is my first post I am beyond desperate! Sadly, I think mine is *** and I could be "clutching at straws."My first twitch arrived last November in my right arm. During December 2011 and the early part of the 2012 I noticed there was the odd twitch in my right arm. I consulted a neurologist in February he did an EMG and said I was fine. However, the twiching continued but was fairly sporadic. My life in the meantime had been turned on its head as had a strong feeling its ***. Some people on this forum have said twitching in the right arm can be a bad sign?Since then I have been preparing to die! I have two daughters 12 and 10. I have written them journals, made boxes full of memories etc. The twitching continued into April and May. I saw a neurologist again in May who carried out an EMG. He said there was slight change but I had about as much chance of having *** as he did? Neuro exam was fine. In the meantime I have just been treading water and biding my time knowing it's going to take time to show up on an EMG. My husband and I took our girls on holiday at the end of June. All the while I sat there thinking this is our last holiday. Had twitching whilst we were away. I just kept saying to myself that when I get back and see the neuro at the end of July he will confirm it. When I saw him at the end of July and walked into his rooms he said "This is not MND" and he did not even want to do an EMG. Fast forward to beginning of August twitching continued and was very widespread so he agreed to do an EMG on the 17th August. Neurologist said there was nerve renvervation and I DO NOT have ALS. However, since then the twitching has increased furhter to such a level that I feel them everywhere. I am very aware of them as soon as I wake up in the morning. It normally takes about five minutes before the twitching sets in. I am beyond broken. I had some blood work done a few weeks and the Dr. said he and his partners have never seen cortisol so low in any of their patients. Given me an adrenal homeopathic mixture to bring levels up. I have been in fight and flight mode for the past ten months! My question is this - have sufferers felt so anxious that there twitching is almost non stop? Mine is so widespread. Some feel just like ripples/grapepie under the skin and are quite fine. :( Others are visible and can I feel them. I know Chrissy said she felt the adrenaline after her fall give rise to extra twitching but mine is everywhere? Increasing by the day. I have read "BFS in a nutshell" about 100 times and can probably say it to myself in my sleep. "That ALS is a nerve pathway etc.and would show up on an EMG." So surely by now if it was ALS it would have been picked up. I just cannot think straight as I feel the tremors in my legs. I have had twitching on my face, lips, eyelid, chest, back, buttocks etc. The scarey ones are small poppers that don't vibrate so that tells me it has to be ALS and that the next EMG will show it. Beyond desperate please help.
 
Who said twitching in your right arm is a bad sign? Well, it's definitely not. We have twitches everywhere, and we'll get hot spots that will choose some part of our body to call home and go for days (even months for some people). And for twitching all over: almost all of us have that too. In fact you'll notice on this board that what most people say is that they started with one twitch, googled muscle twitching and then it spread all over. Yesterday, my lip was twitching, while my calves were going nuts. I never know when and where I'm going to twitch.You have classic, classic BFS. And, you have the classic, classic reaction as most of us have to your neuro's diagnosis of BFS.You have to believe your neurologist. You are fine. I also suffer from a cortisol imbalance and am taking supplements (one called "Pro Cortisol Balance") to help my suffering adrenal glands. I'm guessing it's from the loads of stress this whole journey put me under last year.In one year, you're may regret the stress you put yourself under today. So, do everything you can to reduce your stress: yoga, hypnosis, tai chi, qi gong, whatever it takes to get your stress levels down. It's so not worth it, because you're only twitching, and while twitches are annoying, they shouldn't cause life stress like they are.Mitra
 
Natalie,First off, please relax. Your story is benign as it gets. I have been twitching for 16 months and I literally twitch every second of the day. Some bother me (like my tongue) but most don't. The experts that you saw have told you flat out this is not MND. Believe it. They don't miss the bad stuff. Your story of symptoms is classic BFS. It is clear in your post that you are very anxious and have been for quite some time. Anxiety is like fuel for BFS. So the fact that your twitching has increased is not surprising. I hope this helps. There is a BFS chat site where you can find several BFSers and talk live with them, share your story, ask questions, get reassurance, etc. I think this could really help you. Here is the link....-Matt
 
PS: You don't need any more EMGs! :) I promise. Stop seeing the neurologist and start working on your anxiety. That will help your twitching subside.
 
Natalie,Based on your symptoms, the tests you had, and what you were told, you should believe them and not worry. My twitching was horrible, and from head to toe for several years before calming down. Face, scalp, neck, chest, back, abs, arms, legs, and fingers. Popping all the time, like you describe. Don't let the location of frequency freak you out. You will have many more holidays with your kids. :) Cheers,Bill
 
No more EMG's. You're stressing yourself out and it's counter-intuitive. You've been told that you don't have a MND and you're fine. Understand that many MND/ALS patients do not hear that on the first EMG.
 
Yeah rest assured that your story is no different than anyone else's here. I once thought I was on my last vacation with my kids too, and I started making our journals and letters so that they would remember me. That was five years ago. It seems kind of silly now.You'll get used to BFS eventually, it will just take a while. And stop thinking that a twitch in any one location is worse than anywhere else. It isn't. Your doctor has already told you you don't have anything serious. Now the effort has to come from your part.
 
Cant add anything more than whats already been said. The condition is tough but you learn to live with it. Nothing to indicate a nasty disease imo.
 
Hey there Natalie,I will add my two cents and tell you that your story sounds much like mine. Only difference being my twitching started in my right calf and after my anxiety rose to INSANE levels I began to twitch all over. From scalp to feet...small twitches, big twitches, soft twitches, big thumping twitches. Twitches that stayed in my right foot for 3 months with no relief along with bodywide twitching that was going off at the rate of several per second...it was a nightmare. I've been at this for 13 months and have gone through periods of very little twitching along with more intense twitching. You sound just like all of us here. I had a neuro exam a couple of months into this and after my clinical he said I was in good shape and there was no need for an EMG. I didn't have one until a recent surgery and it was more of a continuous nerve monitoring thing than a classic EMG, but nothing unusual showed up during the entire 3 hours I was hooked up. Every single medical professional I have spoken with said it was a benign condition. It took me awhile to believe it, but about 6 months in I decided I was drowning in worry and gave it up. It still annoys me at times, I have to admit, but I am no longer afraid of BFS. You have to believe your doctors when they tell you there is nothing to worry about. They have no reason to lead you astray.Frances
 
Hi Natalie, I ditto ditto and ditto everything these fine folk have said to u here...u have bfs honey nothing else...your twitching sounds no different to any of us...I think u don't need anymore EMG's, how about u get a referral to see someone and work on your anxiety..that is the key to accepting this condition...and yes I twitch non stop all day everyday, everywhere...welcome to the twitchy club... :D)
 
I have the same initial symptoms as you have except for its my left biceps rather than right. 2 weeks into it, it started spreading everywhere but it seem that its favorite spot is my left arm. Your post actually made me feel better that there is somebody other than me that twitching started on the biceps because most of the people here has calves as the initial point. By the way, I also have clean EMG. Dont worry too much. :D)
 
Thank you to you all for your reassurance! I appreciate it so much. Do any of you experience what I would term "a dull nerve twitch movement?". I am trying so hard to be rational and to tell myself all is ok then I get a twitch and all hell breaks loose. I know in reality one cannot get diagnosed on the internet in truth but by now surely this twitching would have come up as *** if it was by now. I worry myself sick that perhaps its goingto show up on the next emg.
 
My twitching is widespread and constant and comes in all shapes and sizes :) I am fine and so are you. I went through the same fears of leaving my children. Thought about buying them gifts ahead of time, writing letters, etc. Went through phases where I could not even really look at them without crying. You are okay and you need to live your life while you are still here to do so you know? Don't waste time fearing death and dying and not doing what you should be doing. We've all been there. You can get through it.
 
Hi Natalie,reading your post, I thought yep been there done that etc etc. Not to mock but to say hey "welcome to the club" you haven't got ALS or MS. Don't spend your time writing journals (although I'm sure that'll be nice) go out ignore the twitches and live the life you want. Enjoy your children and watch them grow up.Look at all your replies and look at how long most have been on the boards, what do we have in common???? We are all still around and none of us have developed ALS!!!! Now that's not to say for some our symptoms aren't painful, intense or disturbing for some they are but they are for them most part benign. Go live your life and enjoy :D) :D)
 

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