Struggling With New Symptoms

[keegansmommy5]

I have been trying to be strong and think positive about all of this but I just don't know how when my whole body seems so out of whack. I have extreme fatigue every morning when I wake up, I still feel the constant body shaking and I have been feeling new twitches in places that i haven't twitched before. I noticed that I have small twitches on my foot that bothers me that I never noticed before and I saw one above my collarbone that I saw but couldn't feel. Has anyone had one there? Is it ok if I flex my foot and it twitches because that is the only place tht does that. I also have been having issues still with my walking where it just doesn't feel right and the weird thing is it is worse when I don't have any shoes on. On top of all of that I still have the tingling in my tongue and am so scared that it is atrophying. does the tongue just shrink with atrophy like at the tip because I feel like mine has gotten shorter. When you stick your tongue out is it ok to quiver because I don't remember mine ever doing that before. I am so sorry for all the questions but I am sooooo scared and overwhelmed! I am 26 years old and up until 2 months ago my biggest worry was trying to have another baby with my husband and now I am worrying that I won't be here and that is a HORRIBLE feeling. I can't get the minimally abnormal emg out of my head even though the dr said that it wasn't consistant because it wasn't there the second time she stuck me. I seriously have been trying to be strong for my son and husbands sake but all I can keep doing today is crying crying crying. NOt to mention that I just lost my grandfather on thursday! I know that doesn't have anything to do with the symptoms though! Does *** come on this quick literally with symptoms all starting together within a week. I had a perfect emg and then a different doc did one a month later and thats where I got the minimally abnormal emg but was told it wasn't ***. I go tom to see a differnt neuro and want to beg him for another emg. I am so sorry for all the questions and horrible grammer but no one really understands what Iam going thru but the ppl on this board! My husband is absolutely wonderful but he can only look at my tongue so many times and assure me that he thinks im fine. Please any answers and input would be greatly appreciated. i am so worked up the xanax that I took isn't even helping!!!! Could a virus truly cause neuro issues like the docs are saying because I did have the swine flu in April.thanks so muchEmma

 

[ChaoticGlow42]

I have been exactly where you are...and on bad days or when my symptoms are flaring up, I can still put myself right back there.I know how ridiculous it is for me to tell you to try and relax. Hopefully you'll be able to at some point. From what you wrote, I really think you're ok...just BFS. I've had so many of the same things that you posted about. I've been at this since November. I'm had the body tremors, bulbar fears, twitching, tongue tingling, fatigue, etc (along with many other whacky things). By the way...perfectly normal for the tongue to quiver wen you stick it out.Take care...Jess

 

[bfhopeful2]

Funny you say that thing about the tongue. I had the same fear and yes, ALL tongues quiver. I asked about 10 people to look at their tongues and they all do. i know what tongue atrophy looks like and no it doesn't sound at all like you have it. I don't want to tell you what it looks like because you might start thinking yours is doing that. the emg sounds like it was fine. even one abnormality wouldn't be consistent with ***. I too fight the fear everyday and know what you are going through. your grandfather dying could increase stress and therefore increase anxiety. have you been abnormally stressed lately? all the symptoms you mentioned could be anxiety. most likely it is. i personally dont know about the virus thing. my symptoms came on without a virus. i dont think we will ever know. but if you get another clear report tomorrow i would highly suggest seeing someone about the fear and see if you can get that under control. i am still trying to do the same myself. i dont have all the answers, if i did i would be fine. but i do know that there are several people on this board that have had the symptoms for years and never developed ***. no one here as ever gotten it, so if you are here chances are it is because you saw a dr and they cleared you but you cant accept the diagnosis so you are here trying to get support and figure it all out. my new rule is if you are on this board chances are its nothing. i doubt you will be the first one. actually i am very confident that you wont be because i think i might be.

 

[edirish73]

Hi Dear Emma,My condolences about your Grandfather.I know that your hubby is Colombian like me, so he must be Catholic. Do this tonite, will you,Hold your babys and hubbys hands and do a little prayer, something from the bottom of your heart. Let know our Dear Lord that you are in despair, pray for he to give you strength and will.Seek your inner peace first and for your BFS, dear dont worry, here at the forum, we will guide to "the other side" as I call it.If you have to post 10 times a day, Emma do it, remember that we ALL have been there. I was on a mental death row a year ago, now Im alive and kicking.Hang tough Emma, this will pass soon, youll see!!Blessings,Eduardo.BTW, About Xanax, Talk to your Doc about adjusting the dose, right now your No.1 priority should be breaking the crisis.

 

[ySplendidCrafts9]

I can relate to you has well. I have been there! I have a constant left foot twitch, it just doesn't go away. It has been there for 7 months now. In the begining I freaked! I dont know what I would have done without this site. It really calmed me down, but I still was in constant fear until I got an EMG that showed I had the twitches, but said it wasn't ***! Since then I have feared Bulbar...I thought I had extra salvia in my mouth and the tongue twitching started. I would look at my tongue all the time in the mirror. I now get them more often in places, back, shoulder, right foot, calves, thighs, hands fingers. Everytime I start to freak out I come to this website and it really calms me down. Thank you everyone! I see that people tend to go through the same type of pattern. You get a twitch, it gets worse and spreads, you look up twitch, you freak out, you go to a Neuro, they say you are fine and it isnt ***, but you dont believe them, then you get EMG -more relieved, but think you have Bulbar. Some people with go on and get another EMG, somedays I think I want another one. I think i should get one in my arm since they are twitching now.I know it is hard to get use to the twitching and tell yourself it is just BFS. I still cant do it! I am much better than I was, but I start getting worked up every now and then. I start thinking I am one of the few that have the slow onset ***, just b/c it has not moved from my left foot and it is in the same place! That freaks me out. You just dont understand how you can just start twitching and no one can explain why.

 

[BarbiePetals]

Emma please know you are not alone. I know how you feel. I am scared too and believe me I have probably cried more tears than anyone. I'm 4 months into this and have no answers from the doctors just that it's BFS. As for the tounge, they all quiver. That is why when a neurologist exams your tounge they make you rest in inside your mouth. Don't worry abou that. When I get scared, I come to this board and I pray. Honestly, there isn't much more that I can do at this point execpt get another opionion and really i am sick of going to doctors and I'm sick of the tests. I'm convinced I have a electrolyte imbalance even though they tell me no. I know how hard it is not know what is causing this but you have to know that we are all in the same boat here. None of us know and we are all scared or were scared at one point or another. It's hard living everyday in fear. Talk to your doctor again and explain what is going on. Maybe you need some long term anxiety meds.

 

[priorityhigh5]

Hi Emma,There is not much that I can say that the others havent already told you. But...Three months ago, I was right where you are. There is nothing that anyone, whether they are Doctors, family, friends, people here on the forum, can tell you that will make this all better for you...or for anyone who is at the point you are in their BFS journey for that matter. The 1st step has to be yours hun. We all know how incredibly hard it is, seemingly impossible at times, but if you really reach down deep, you too will get past this flare up. That really is all that this is, a flare up. I know that doesnt seem possible...but that is the reality of it from thousands of peoples expierences right here on the forum. Flare ups happen to us all, but the good news is that with time, they happen less frequently, they are less severe, and you begin to be able to handle them better. There are MANY reasons other than ALS and other scary things why an EMG could show dirty...and in fact, I wouldnt even classify yours as dirty. "Inconclusive" is a scary word, however it is not near as scary as if the really bad things show up time and time again. There are other people here who have had dirty EMG's. Search them out and PM them...it will help you tremendously.As others have said, everyones tongue twitches, shakes, tremors, looks funny, when you stick it out...I can make mine do all sorts of wild things. (Ed, Mario...NO COMMENTING ON THIS!!) At this point in time, its time to put the twitches and other symptoms on the back burner and focus on the most important symptom you are having, which is anxiety. I think you should talk to your Doctor and ask for a referral to a good Psychiatrist...they really are a perfect place to turn to get the right combo of meds down to help you beat the anxiety. I PROMISE you, that once you are able to control the anxiety, the rest of the symptoms will fade...remember...that is a PROMISE.~*~Amy~*~

 

[paucek.sheldon1]

Emma,When reading through your post what came to my mind is that you have been through a lot recently.I am of the opinion that the human body can only take so much. And after to much it begins to have strange symptoms. One of them is BFS.I think one of the best things I have done for myself is downshifted. I try to take it a lot easier now. Not worry so much about stuff. Instead I try to take it a day at a time. Before I was a major worrier and a planner. Major type A.The other thing is I am a lot happier now. Outside of this BFS, I am pretty happy with my life. I realized I don't have to much more to prove. I have a nice house, two decent cars, a wife who loves me, parents still alive, and two great kids.It is enough for me. Others make more money, have fame, faster, stronger. Whatever. I have decided what I have is enough.So back from my rambling to your case. You might want to consider trying to take it easy. That maybe you have had so much happen in your life in the last year that your body is telling you to slow down.I also agree with prayer. This BFS has made me realize my mortality. That led me to figuring out there must be a God there. That made me realize that if God loves me the way I am, I don't have to prove so much to myself or others. I pray to God about my BFS. I ask him to heal me. I tell him how unfair it is. I tell him I am angry about it. Boy does he get an earfull.I have been in such bad shape from this that I have thought of cutting my legs off. I am mainly a calf twitcher. Sometimes in the arms. I kid you not. I have had toughts that if it got bad enough I would cut my legs off. I mean you can live without your legs right?But then it occured to me, seeing some of the Ventrans who have lost limbs. I bet many of them would trade my situation for theirs. That they would rather twitch and have all their limbs than not. Maybe I should be thankful for what I have.My recommendation to you is take it one day at a time. Get on your knees in the morning and ask God for the strength to make it through the day. Then at night get on your knees and thank God for helping you make it through the day.That is exactly what I did when I was at a similar point.I hope I have helped.-43RichyThe43rd

 

[raideryparkeryranger]

I know absolutely how you feel, as do many, many others on this board. I am in the same boat as you, i can't seem to shake the mental aspect of this thing. Been twitching for 1 year on July 24th, but still always have that thought in my head. If it makes you feel better, I've been twitching 24/7 really, really bad, and honestly, as I look back on it, twitching and tremors/vibrating is all it's ever been. Been waiting for the weakness, but it's just not here. Wish I had back the year I missed because I have been really bad, depressed, anxious, fatigued. I finally realized that I have to live today for today. When I think like that, I can have a pretty *beep* good day, and you know what... now I'm starting to believe that in 2 months or so... yeah, I'll twitch like a son of a gun, but... my body still fully enables me to do everything that I ever did. This thing can mess you up BAD, really bad in the brain. I used to think the anxiety stipulation was BS (still don't believe that it was the initial cause), but it sure does make things worse, and keeps your brain in a sort of limp mode where its' totally succeptible to bad thoughs, reasoning, etc. After a while, you will get better with this, you kind of just become numb to it.