Living with Worries, Anxiety, Concern

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InvisibleItches

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Hi guys, so I've already received great support over the past few days on this forum, but I'm still full of worry, anxiety, and concern, and it is making it almost impossible to live my life day-2-day. All I think about is that I may have ***. So, here is the most recent trouble:...the past few days, whenever I talk I seem to be accumulating a lot of extra saliva,like I always have to spit now, and my tongue and roof of my mouth feel very unusual. Ifear that is this the start of my tongue breaking down. Also, not only I'm I still doubting my clean EMG from May, although many of you think that is proof positive that I don't have something more sinsiter than BFS, but I now have a curious buzz like feeling that is constantly running through my veins -- up from my toes where they are buzzing and tingling to my calve and things -- I'm so convinced that this is the beginning of what I fear must. Because it has started on that path of what I have read where *** starts, on the extremities and works its way up. What should I do? How can I cope? I think stop thinking that this is it. It is horrible and is ruining my life.
 
I have not posted on here in about a year, but ill put a video up of my twitches, i have BFS and i gurantee you wont twitch like me !! relax you are fine
 
I'm certain if I start thinking about extra saliva, I will have it too! Saliva is such an automatic response if you think about it. It doesn't mean deadly disease! Really! Pavlov's dog, yummy food, it's an emotional and programmable response! Don't sweat (or salivate) over it!As for the buzzing, I have it too! It's actually just very fine muscle twitching. Mine is almost 24/7 but when I get a good night of sleep and can calm my worrying, I get some relief. I'm trying to do this too, but you have to stop your negative thought pattern. I know it's hard, believe me! But there is no reason to think you have something bad. You have anxiety!!! Your mind is so powerful, but it can't hurt you!Do you have an iPhone?
 
Thanks Everyone, And Amaranth, no I don't have an IPhoen, but I do have a DROID.I agree that the more I think about it, the more it manifests itself -- what a horrible pattern. However, I've also noticed over the past few days that I seem to tingle and twitch even when moving, working out, and walking now --- that never ever used to happen to me!! Only when sitting or resting did I used to twitch or buzz...................so ahhhhhhhhhhhhhhhh, WHAT IS GOING ON!!!!! I hope this is normal with BFS......
 
Jezzzzz and I even forget to mention a constant, weird pressure now in both of my feet -- especially the left, where I also experience a toe buzz and tingle. Can someone give me some guidance on this and my last post?! The constant pressure in my foot is almost painful -- BFS????? I hope....
 
Take a deep breath. YOu have nothing to worry about, trust me.You have allowed your brain to stray waaaaaaaaaaaaaaaaaaaaaaaay out in the weeds away from reality. I've been there. Your anxiety is in full force and you are hypersensitive. During these times, I felt all sorts of sensory symptoms...more than I could explain in writing. Every hour I was feeling something different. Its weird, unnatural, annoying, and scary. But where is the rational cause for worry? Sensory stuff that I've dealt with (and you are currently) doesn't even remotely relate to someone who would be dealing with ALS. As I've already said before, your situation could really not be more BFS if you tried. And yes you can twitch when moving around, its just more noticeable when sitting or lying down. The bottom line is, that you are obviously having problems getting your head wrapped around reality. You need to learn to "talk yourself down" when you get all worried about a disease you CLEARLY don't have. Until you get a handle on your anxiety you will have a very tough time living day to day. LIfe is short as it is so try not to miss too much of it over nothing.
 
I don't know about droids, but look for apps by Andrew Johnson or go to withandrewjohnson.com and check out his relaxation recordings, they really help me calm my mind.
 
Ahhh. The old "extra saliva" symptom :LOL: Hang out on the board long enough and you will see that BFS symptoms follow a natural progression:1. Twitch2. Google3. The big freakout4. Battery of tests (all about normal)5. Relief6. Begin to doubt tests7. Onset of "bulbar" symptoms (excess saliva, slurred speech, scalloped tongue, swallow reflex--all psychosomatic, mind you)8. Reassurance from board9. Relief10. Symptoms move to next body part11. Repeat steps 8 through 10Sound about right?Peace.Becky
 
Thanks Twin, Johnny, and Amaranth,QUESTION ABOUT "CRAMPS," "FOOT CRAMPS", and Twitching the second one wakes up from a "good" nights sleep...............So, this is all very normal?! I know my thinking about it all day is making it worse. It is just hard now, because before it was just my eye. That lasted months, 10 to be exact...So I guess that truly was the start of my BFS. Then I was FREE OF TWITCHING FOR AT LEAST A MONTH! What a beautiful and carefree month that was. BUT Then, a BRAND NEW AND SCARY EXPERIENCE: The toes, feet, and calves this week, followed by a constant buzz that I had never thought about in my back, but which I have had for months now. But, let me ask the veterans again, today I wake up with, and right away, as if to say hello, my day starts with a thigh twitch and a slight face twitch. I guess this is just the routine? Still, scary way to start the day.Also, how normal are cramps?? Most scary thing those far, was, along with my foot twitching and buzzing, came a cramp last night --- ahhhh!! Can you imagine how scared that made me....It felt like I was losing control of my foot, like it was breaking down, and that it was the start of something bad. I'm hoping it was just a cramp, I'm not sure, because I've never had one anywhere besides my stomach before. What is going on!?!???This forum is a lifesaver for the knowledge and understanding it provides. I already feel a kind of closeness to the people who have provided me helpful words and encouragement..... But for some reason, despite it all, I'm still horrified.
 
Thank You Cenkay.A,Thank you very much! So Cramps are common?! Good. I was at the beach today and my feet kept cramping, which was scary. But I was still able to play catch, swim, and run, so I guess I'm okay. Also, I just read that an EMG even on just one side of the body could detect a serious problem up to two years in advance?1 I was worried because I only had the EMG in 3 spots, but I guess my EMG back in May is sufficient!!!!!!!!!!! I hope.One last thing...A new and very scary and unusual symptom. This has happened to me twice this week....And I was hoping for some insight from all of the veterans. Today when I got home from the beach and was standing still in the kitchen, and I had an unusual feeling of all of the blood running through my legs, seemingly through my veins. This happened last week as well. Almost a feeling of having one's legs fall asleep, but with an intense feeling running through the veins. I'm I ok?! Is this a weird sign of something that we all fear here, ***? I'm sorry that I've had so many questions...But, everyday, a new symptom, seemingly. And this latest one, of the blood rushing - I believe that is what is happening -- or a feeling of something running up and down my veins, up and down my legs, not just one spot, but an entire body part, from the foot to the thigh, is horrifying. Especially coupled with the twitching in various body locations, and the buzzing!Lastly, Cenkay.A, you are in London? I studied abroad there. Great place. I'm from California and just finished college as well.
 
Hi and welcome, so sorry you have been so uncomfortable and scared with these symptoms, but I have read every one of your post and you have not mentioned one symptom that the majority of us here have not experienced on some level. You are very BFS normal, so please let that sink in so you can begin to calm your nervous system. The majority of your symptoms will calm considerably (if not go away all together) if you can get the anxiety under control. Anxiety can control many aspects of this condition if you let it and the degree of intensity of your symptoms, so please understand this as it will eventually be what will give you some control over your symptoms.Your newest symptom, blood rushing through your veins, had it, been there, still get it occasionally but to a much lower level and not nearly as often as I used to. Me and someone else on here used to describe it as a feeling like a garden hose that someone is putting pressure on while the water is rushing through it. Sound familiar, I hope so...so that you can believe that you are not experiencing something more sinister. I promise you, I read your story and follow up posts, you are not a special case, you fit rite in here, and we will be here for you to help you through, and you will get through this :D) Please take care of yourself, and breath easy, you are going to be just fine, promise.Robynn :D)
 
Robynn,That is very nice of you and thank you so much for your knowledge. I'm very very happy that, according to you BFS veterans, I'm very BFS and that it is nothing more. That is great. Yes, like I have a hose running through my legs. It was worrying because I had just gotten home from an active day and I thought that, you know, my legs maybe weren't working anymore. Ahhh. All these symptoms. So, other people, like yourself, have had such a thing happen!? That is reassuring. How did you manage dealing with the feeling w/out thinking it was something worse?! That is where I have trouble coping. I want to accept that this is just BFS, and I'm almost 90% there....but in the back of my mind, it is still worse case scenario. I'm trying my best and I'm so thankful to have found knowledgeable and understanding people here who have gone through the same thing. I vow to be apart of this community as I ride this process out, and hopefully one day (remember, I'm still not %100 convinced that I'm OK) I will be here to help people deal with BFS and there worries as well.
 
"Ride it out" is exactly right. Most of us come to the board in a full-on panic and that's where you are right now. You are extremely hyper vigilant about every little bodily sensation. You may have experienced some of those sensations prior to BFS, but back then, you weren't consumed by ALS fear. Please remind yourself that we have all been right where you are. It may help to see a doctor about your anxiety (which causes a multitude of physical symptoms.) Many of us have used anti-anxiety medication to get through the roughest part of this. I spent about a year on Zoloft before getting my doom and gloom thoughts under control. Please consider the relief that treating anxiety can bring.
 
I have read a lot of places that no one have ever had ALS and a clean EMG. No one. Ever. E V E R. None, zip, zero. It has never happened. So if you got the ALS you would be the first reported case of ALS based on a clean EMG. The first case in the world so to speak. Out of a population of 7 billions. Thats 1:7.000.000.000. Or rather (as it never had happened before) its zero. So even with a zero chance you are still not convinced? Hmm - thats a bit odd, Id say. But ok - some people also think they are emperor Napoleon or even Caesar. Chances are about the same. But I know - who cares about statistics when the body does weird things? Oh, and regarding ALS - if you have any symptoms you can feel - it points AWAY from ALS not towards it. So go back to life and live it! You may die tomorrow of something else. Stress, cancer, stroke or something common.
 
Why hello there, Im not a vet as such(approaching 13months) but id like to add my two cents:Twin2 words ring so true. Hypervigiliance is the watchword in those *beep* hellish opening stages of twitching. You will notice things that were probably always there but are now really *beep* scary. Human nature eh what are ya gonna do?I briefly read your story and when I didnt see phrases and questions like " I can't get out of my chair", " My friends and relatives ask me why I am struggling to walk..is that bfs?", "My doctor called for a social worker and a bottle of whiskey during my examination..do all doctors do this?"...I just went right ahead and decided that you have a bona-fide benign twitching problem...I did...I just went right ahead and decided that.I like making decisions it makes me feel all warm and fuzzy..and after all it IS all about ME ME ME.Listen to FantasticFurball, like really listen because there is so much truth in his post, remember that we all twitch....over 4000 of us now on this community alone and not one person has ever came back and said "I am like totally dying and stuff...what a nightmare". Take heart and like someone else said...ride it out...there aint but one cure for this problem we share and that my twitchy friend is time.
 
Twin2, Fox2Run, darr, mjc, Thank You All,I read each post and they all helped immensely. I checked out the link you provided MJC, and that was great and informative. I'm slowly doing better. The hose running through my veins, up and down my right and left legs, is a weird and unusual feeling; coupled with this foot twitch and toe tingle..But I just keep saying, "it is nothing, it is nothing, it is nothing...You can still run, jump, play sports, you are OK." I'm hanging in there. I'm at work right now, and I just received a call from my Neruo from back at home...finally. She didn't really ease my worry. She didn't seem to want to talk at all, we spoke for about 2 minutes, max -- and when I asked, "so, does my EMG of just my 2 arms and 1 leg completely cover me and put me in the clear from ***," she wouldn't answer. When I asked, "I'm I ok," she said "YES," but that she would like me to see a Neruo in my new hometown. This has set my mind wild, once more. I'm concerned that she wasn't so confident that I was ok as this community seems to be. Again, the hardest thing is accepting that for now I'm fine, but what if this is just the start of something evil. And now, like many posts I have read and have been warned about this, as I drink my water, I seem to be struggling to swallow the H2O. Likely, all in my head....Likely, it is my focusing on it. Making it harder. I really appreciate all of the knowledge here, again. I love it. However, I wish I would have never talked to my Neruo today. She freaked me out. And now, I seem to have lost all of my momentum. Back to the though, this foot twitch, cramp, tingle is just the start.....Ahh! Maybe I should see a new neruo in my hometown?
 
I would say that Twin's "steps" are pretty on the money. I would add in some steps like "try different meds" and "switch neuros" and maybe even "repeat EMG" in there somewhere. Fight the anxiety. Get meds if you think they might help. I took xanax early on and it help immeasurably. Its not for everyone, but you might try it. As to the cramping. Very very common. And in fact you get to add an extra "C" into your dx, now you have BCFS, which is what I have. Good luck and try to stay calm.
 

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