Overcoming BFS: My Story

[sabre]

Hey everyone! I stop by once in a while to see what is going on with this board, but rarely do I post. I saw where Kit was posting again and I wanted to say that she helped me so much during my days of "freak out." I have BFS and I guess I will battle with it for a while. After nearly three years of twiching all over I can tell you that I am still as healthy as I was three years ago. No weakness, atrophy or any thing like that. I have learned that the more I keep my mind on living my life, the less I think about other things that can be so dangerous. Kit really straightened me out a couple of years ago through a series of PM's and I finally got my head on a little straighter. Some advice for those of you in a pit with this BFS right now. First, if you have seen a doc and have gotten the all clear, then move on. I did not do that for some time and I basically was just hurting myself and my family. MND and such diseases are too damaging to just slip by a doctor. Second, do not take an internet article here or there and decide that you fit the mold for a terrible disease. I never had a tongue twitch in my life until I read that ALS can produce them. I never even paid attention to my tongue until I started reading the net. When I live my life and keep my mind busy, I never twitch. It is only when I sit down and have time to "think" that I get screwed up. Third, do not just assume the worst. As Kit says, "Hoof beats are almost always horses, not zebras and almost never unicorns." If you have twitched for months, but still you are the same weight and strength, then you do not have ALS. Which brings me to my last post. BFS can have many causes, some can be treated medically and some can not. But the only cure for BFS is TIME....It took me months to really believe that I was okay. There will come a time when you finally say, "The doc was right. I am okay." I was a severe case. I went to a Neuro who graduated from Vanderbilt. He had seen all types of ALS in his career. He works with the University of Kentucky now in treating ALS patients. He did my EMG and told me straight up that I was fine. But I did not believe him. Here is a guy who is trained in this and I thought I knew more because I had read the internet. Do not do what I did. There is no need to struggle with this in your mind as long as I did. You are twitiching sometimes, big deal! Accept the fact that unless told otherwise by someone who knows, YOU ARE OKAY!!!Later... Later...

 

[EyeoftheWild]

This post is the bomb. Backagain, rock on! What great advice and articulately put.Basso

 

[sabre]

Thanks Basso...Just trying to give back a little wisdom...Later...

 

[Krackersones]

Do you really only twitch when you think about it? Do you think you twitch the same as normal people but just worry about it more or do you really have an abnormal but benign level of twitching. I ask because I wonder how many people are just normal but overly anxious and how many really have a condition even though it is benign. I went from never twitching to having them head to toe somewhere almost every hour of the day. They were and are visable and grab your attention even when you are not thinking about twitching at all.Anyway, I'm glad you are still updating us. Longterm member posts are the best and most reassuring.Krackersones

 

[sabre]

I notice my twitches when I think about them. Sit down sometime and just notice how sometimes you leave muslces in your body tense without even thinking about it. I have that problem with my legs. I also have that with my jaw and my tongue. BFS and the anxiety that came with it gave me a real condition called TMJ. I keep tension in my jaw and throat constantly. And guess what? I get twitching there quite often. I am telling you that when you are not allowing the twitches to occupy your every waking thought, they get better. Since I read all this bulbar ALS stuff, I keep my tongue plastered to the roof my mouth. It stays tense and I get a occasional flicker on the side of my tongue. I know it is tension. I am a pastor and I speak for long periods of time. I can assure that if I had tongue weakness and slurred speach, someone would have noticed. My twithing is tension related, I know it is.I thought I was the only one who had this issue, but after talking to others I have found that I am the only one that makes a big deal out of it. Lots and lots of people have twitches in their legs and arms when the lay down after a long day of work. That is normal. I think there are lots of folks on this board who have a medical condition that causes twitching. Ialso think that many of us make it worse by anxiety and concern. My neuro believes that BFS is something akin to Isaac's Syndrome. He said something about postassium channels blah, blah, blah...I don't know about all that. But I do know most of the twitches that I get are in the muscles that I tend to carry tension in. If you will put aside the fear of ALS and all consuming fear of death that comes with it, you will see a difference. I promise. Later...

 

[beensuggested]

Hey you!!! It is great to hear from you again and great that you are doing well!! I know I didn't beat you too hard about the head when we were PMing but I am just thrilled to know that you accepted what I knew about you...you are just fine! Thanks a bunch for checking back in and sharing some of your positive attitude and wisdom. You made my day!!!!Big smooches!!Kit

 

[sabre]

Folks, listen to Kit...She is as good as it gets when it comes to telling you what is going on medically. Also find something to do when you start having those crazy thoughts and are tempted to check the ALS sites on the net. If all else fails, clean out your garage or wash your car. After you have done that you will sit down and rest. While resting you likely will twitch like mad, but you will also say, "Crap, if I can do all that I must be okay." It is a wierd cycle. You have to work and stay busy to prove to yourself you are okay. At the same time that exercise will make your twitches flare. BTW, for those on the "I think I have bulbar ALS" kick I wanted to tell you a few things. First, you study your tongue longer than a neuro would in his/her office. A neuro could see troubling signs with your tongue in about 5 seconds. You folks study it for hours. After the work out you put it through, you are lucky if it doesn't just fall out of your mouth. Also, when you get that "I can't swallow" idea in your head and then you start gulping every drop of saliva in your mouth. Stop that!!! You will cause strain in your "hyoid muscles" which can lead to real swallowing trouble. How do I know that? Cause I DID IT!!! Relax. Tension will surface in your throat as quick as anywhere in your body. I have laryngeal muscle tension because of my job and due to anxiety from the BFS crap. This was my docs way of calming me down on all that stuff. Go to your kitchen or fridge and get a glass of water. Turn it up and "chug it!" I mean thow it down like you are in Hell and need a drink. If you can do that, you do not have a neurological issue with swallowing. Food that won't go down is likely due to GERD or tension in the throat. Remember, swallowing is as much reflex as anything. If you force it, you will choke yourself. Let your body do its work. Hope this stuff helps. I can assure you that I have done what some of you are doing...Studied my tongue for days. I even had a barium swallow, went to several ENT's for nasal laryngoscopy and all that crap. I have had MRIs, CT's you name it. I have done every self test known to man. Even reading tongue twisters over and over to make sure I did not have slurred speech. I am telling you now, if you are doing all that, ALS won't kill you. Your family will or you will just go nuts with worry. Later...

 

[sabre]

LisaLM..You were here when I started on this board and you have always given out good info and encouragement. After a couple of years and finally getting my head together, I feel like I can talk to people who are struggling. It is just tragic that "twitching muscles" have become THE sign of ALS in so many people's minds. I found in my time of struggling that all the docs I went to HATE THE INTERNET...I just knew I could not swallow and wound up going through all sorts of unnecessary test. Oh well, as my Grandmother used to say, "Live and learn, die and forget it all." Later...