Exploring ALS Symptoms and Causes

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Karen92

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Hi all,As many of you know, I have been posting here for about a month. I have constant all over fasciculations--the longest interval between them is about 3 seconds. I was given a clean EMG and nerve conduction on my limbs in June and right after that started tongue fasciculations which have not stopped. This new symptom has led to a referral to an ALS specialist in Milwaukee. My appointment is not until September 5th.I am 39 years old and a teacher who is lucky enought to be home with my 3 kids during the summer. They are adorable, wonderful, bright, funny. And their mother is a wreck. I go into the bathroom dozens of times a day to watch my tongue twitch on its own. I visit ALS sites and ask about tongue fasciculations, and get stories about how IT sometimes starts this way. I walk around on my toes and heels all day and then worry when I have a sore ankle. I simply cannot believe the constant tongue fascics are benign. I thought the clean EMG would reassure me and I was so happy on that day--but have been a wreck ever since because of the tongue. I feel like I am missing out on this beautiful summer with my kids because of my total pre-occupation with my health. This is totally ruining my life and making me into someone I don't want to be. But I don't know how to stop it. :( Karen
 
Hello Karen,I have been close to where you are. I guess most of us have been.What worked to me was to take things just one day at a time; I couldn't take thinking about the future. Just that day.So I got on my knees when I got up and prayed for the strength to get through the day. Then at night I thanked God for getting me through the day.After about a month I get a grip. Though it has taken a lot longer to get back in control.BTW I have two kids. Aaron 9 and Ashley 6.I hope I have helped you.-43RichyThe43rd
 
Karen, I totally understand where you are coming from as my shoulder has not stopped for 3 + weeks, I have to wait until July 28 for my neuro, I was so depressed/anxious that I went to see my GP, I have two beautiful children and a wife as well who I have placed this burden on. My GP did a strength test and reflex test for me to try to calm my nerves down some more. He told me no assymetrical weakness but without an EMG it is not 100% and he gave me muscle relaxants and some Prozac hopefully we can both just calm down, I don't understand why you can't get in and get an EMG at another neuro on your tongue, I would call around and find maybe another neuro who will take you in before September, that is an awful long time to wait for good news!
 
BTW if you guys have been given strenght tests and/or EMGs, stay off the ALS sites.I have sympathy for the people who have that. It is really bad. But it is 99% more common to have BFS.Try not to self diagnose. You will drive yourself crazy. And not to be rude, but you are not a doctor. OK, sorry of that came out rude. I am just trying to make a point.-43RichyThe43rd
 
Agreed, ALS sites are only helpful for those who have ALS.Karen, how is your tongue strength and speech? Can you touch behind the molars on each side of your mouth with your tongue? Does it come straight out of your mouth when you stick out your tongue? The fact that the fasciculations started all over and then spread to your tongue, instead of the other way around, is probably a very good sign that they are indeed Benign.
 
Why don't you call or email your neuro and talk to him/her? If you have been examined and told you are fine, most likely you are being referred for peace of mind. If you need more investigation then your doc needs to tell you that and get you in ASAP. I think you mentioned that you were waiting on insurance to kick in. I would still call and talk to a doc in order to get some sort of idea of where you are heading with this. You may be making your anxiety worse for no good reason. It will take courage, but if I were you, I would call my neuro and say, "Look Doc, do you think there is something more here or do you think I have psyched myself out over nothing?" If you can not do that, then call the ALS doc and try to get a 2 min conversation with him and see what he says. Just ell them that you are scheduled to see him, but have some questions. Shoot straight and tell them you are scared and need some help. He will be careful because he has not examined you, but I would be willing to bet that if your speech is not slurred, no trouble swallowing and no real weakness, he will tell you that you are likely making something out of nothing. You have posted here about biking, paddle boating, and moving heavy items without trouble. And although it can happen, the chances of a 39 year old coming down with bulbar ALS is pretty slim. As a matter of fact the doc you are going to see has said that bulbar ALS is seen most always in old people. Bulbar invlovment in limb onset ALS is usually the last stage, not early on. From what you have posted you show no signs of either upper or lower motor neuron involvement. You most show both for it is to be ALS. Later...
 
Hello all--I couldn't agree more with all the advice given here. Mamakaren, we've all been in the same place you find yourself in now. It will pass, but keeping things in a logical perspective is essential to get beyond this. Like so many others here, I had it in my mind that I was in the grip of ALS when the twitches set in; after that, it's all too easy to start connecting EVERYTHING--pain, cramps, tingling, etc--to ALS because we've essentially convinced ourselves that what we have simply couldn't be benign. The neuro said you're OK, and combined with a clean EMG, you are still OK! You had all over twitching and it sounds pretty severe; it's no surprise it would eventually engulf your tongue--it's just another muscle! So, you had the ALS fear in mind with the all-over twitching when your tongue "joined in." But those dots just don't connect! Like any other place on your (our) bodies, twitching in ALS is a symptom of denervation, so weakness (or slurring, trouble swallowing) would have already manifested itself. It would be quite odd for you to have benign all-over twitching only to have bulbar onset ALS "right after" a good clinical exam and clean EMG. When I first visited the neurologist, I had to fill out the usual paperwork. Among the many questions were things like "Do you have trouble swallowing?", "Are you falling down/tripping?", "Do you have weakness in any limb?" Nowhere on the form were there any questions about twitching; my neurologist then, as well as today, remains unimpressed by my twitching. I'd follow backagain's advice and contact the doctor. Perhaps if he knows how spun up this has you, his office can shuffle some appointments around to get you in. Or find someone else to conduct an EMG on your neck/tongue--it doesn't take an ALS specialist to do that and to tell you that it's normal. And "amen" to wamjr and 43RichyThe43rd--stay off sites for diseases you don't have :) and don't self-diagnose. Push to see or talk with the doctor so you can put your mind at rest and get on with life! Hang in there--Mark
 
Hi mamakaren,I know how you feel. I had a perfect EMG back in April, tongue included. Back then my tongue symptoms seemed relatively minor compared to now. When all the twitching was basically in my tongue, I figured it was over. I had another tongue EMG a couple weeks ago and it was still perfectly normal so I think you are fine. I even have occasions where I really do mess up talking or my tongue feels tight and the words don't come out right. I thought with that too it could never be normal but it was. I would do what others have suggested and call the neuro back that did your first EMG and ask if he can do your tongue. Waiting can be horrible, especially until September.I'll pray for you.Nettie
 
Hi there and welcome,Some background: I posted here awhile ago, but I usually don't participate since this is all rather new to me. I was diagnosed with BFS recently after 7 months of major fasics everywhere but ESPECIALLY on the tongue (that's where it all started for me). For a while I've had them on and off , but last time they lasted 3 months NON STOP (when I say NON STOP, I mean just that!!). They are gone now (apart from slight pops and tiny twitching here and there), but I know they will return. For the record, I've had 2 clean EMG's (my doctor didn't even think the second one was necessary, but I insisted) and a good clinical evaluation (by the top specialist in my country and 4 other neurologists for second, third, fourth and fifth opinion….. all said the same: BFS) – and that's all it takes!When this started my life was shattered. I lost my job and had no energy getting up in the morning. All I wanted was to meet someone who suffers from similar symptoms and was not diagnosed with ALS. A friend of mine introduced me to this forum and here we are, and there's a bunch of us here with the tongue fasics. Some had it for years and they are alive and well.I'm still frightened, but much less since I'm beginning to trust my doctors and other experienced BFSers on this site. It will take you awhile to get there, but YOU WILL GET THERE! You simply suffer from fasics that may be annoying (to say the least), but are not life threatening!I agree with the advice given to you here - to see a good neurologist as soon as you can just so you'll have some peace of mind. Trust me, I know exactly how you feel. I also know that once you get the reassurance from a specialist, you will feel a whole lot better. The fear may return later on, but that's what we're here for, to remind you that you are just fine. :) Feel free to contact me at any timeMay
 
Thanks so much for all the support. It helped me make it through this day. I even forgot about the tongue for an hour or so this afternoon while out and about with the kids. This site is a godsend--thanks to all of you.Karen
 
I've been having more tongue fasics then usual with this relapse. I have had them in the past, but not as many as now. I've had BFS for over 30 years. Still operating at 100% Best Wishes, Denise
 
Karen,I had twitches eveywhere possible for two years, but not on my tongue, and after two years of doctors and neurologist who could find nothing wrong, I was really trying to learn to live with BFS and move on with my life, then my tongue started twitching, and it was really bad twitching. I set up another neuro appointment, they did and emg on my tongue and everything was totally normal, my tongue was twitching for the neuro to see, and he was not at all concerned. I think the follow up is good for your piece of mind, and you should not wait until september, not because you may have ALS. Tongue twitching is a typical bfs symptom, good luck
 
Hi Believe me you have nothing to worry about, although, saying that I know you will still worry, as I have been there. I do not come on the site as regular, as I used to do. I only pop back now and again to help the scared and fearful. Those like my self three years ago who would not believe there was a condition that had such strange symptoms.I had the fasics, the pain, weakness. Fatigue, tongue, eye, toes finger (you name it)twitches. Then came the neuropathic pain in my back, legs, feet, Oh yer! the feet, ouch, that was by far the worst. Then came the one of the biggest symptoms with BFS, the mind games. This thing will twist your mind. It will give you ocd, stress, anxiety, etc, etc.But I can tell you now, there is such a condition and it is benign and there is light at the end of the tunnel, honest. It may take a while, but you will get over this thing. As soon as you accept it for what it is you will start to feel better. That condition is BFS or PNHE. See (http info) this may help to explain the condition.It is strange and horrible, but it is benign. No way on this earth would I have believed this three years ago. I was a total wreck. Unable to enjoy my family or life. In my mind I was on the way out. Now then! Three years on, (now)here I am. Slight twitches, I very rarely notice. I now go out socialising, enjoy my family,. Very rarely I am in pain and getting better and stronger as each week passes. I am on no meds what so ever. It may take weeks, months or some years but you will get there. So please calm down and enjoy your life and family. If you need any help just pm, as I do not visit the sigh much now.Good luck and fight it!!Chris
 
Hi Chris thanks for the post. I have the pains like you had too. What if anything did you do for them and did they eventually subside?Linda
 
HiFor the pain i tried a drug called Gabapentin, This helped with the pain until i could cope. i am now drug free and coping fine with very little pain, although, for some reason my feet still pain if i stand for long periods of time. Still, they have improved by about 80% and that is good.I had bad foot/leg pain for two years and thought it would be with me for life, but there is light at the end of the tunel, honest.Good LuckChris
 

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