To the BFS class of 2011 and beyond. (i write this as much for me as others) I was very skeptically of this whole BFS thing and refused to accept this is what I had. Here is my story. It was 1 year ago today I embarked on one of the toughest years of my life. It was 1 year ago today I started to notice my hands were jerking and twitching. This twitching quickly moved to my calves, face, arms, back, tongue and even my butt. I was beside myself with fear. I drove my wife nuts and isolated myself from friends and family. I could hardly work (luckily I work from home most days) Of course I had all the tests that came back “normal as normal gets.” Clean EMG at 3 months. Neuro follow up at 9 months. Regularly talking to my friend who is a MD at the Mayo clinic but I still found myself consumed with my symptoms. So here are my observation and advise. 1) Relax there IS something wrong with you. Everybody has a muscle twitches. You had them long before you came to this board. However, not everybody has them to the degree we do. 1000 or more twitches a day is not “normal.” So what is wrong with you? I don’t know and either does anyone in the medical community. I know the evidence says it is not ALS. So then It could be 1000 other things. You can spend thousands to diag and even “treat” your symptoms but there is no magic cure out there. (otherwise this board wouldn’t exist).2) BFS is real and it is more than just a physical syndrome. It took me a long time to believe in this “benign” condition. Considering my neuro and my friend both originally said they don’t believe in “waste basket” terms like BFS. However, after months of this condition and follow ups (along with both of them doing some research) both of them said BFS is real and is not fatal. On this site you will find hundreds of neuro reports confirming BFS as a real but an unknown cause. You will also find getting over this mentally is just as hard as dealing with the physical symptoms. 3) Benign means not life threatening. Benign doesn’t mean, not painful, not sore, that it will disappear, that it doesn’t affect your entire body or that your symptoms won’t get worse. Benign means it will not kill you. So just because it is benign doesn’t mean it is easily to live with. 4) Not all BFS is created equal. It is very possible to feel lonely on this site as you read other’s experiences. BFS has different manifestations and severity. Some people only twitch a few times a day. Other have 24/7 calf twitches. Others have body wide twitches, jerks, flinches and buzzing and cramps. For me my symptoms have gotten worse as time has gone on. My 24/7 right calf twitch with random BODY wide twitching is way worse than one year ago. Is it scary at times…sure, especially because my right leg is really tight and never stops twitching. But after one year I can run a 5k in about 28 min and hit softballs in the batting cages. 5) ALS is rare. 24 people a day get diagnosed (High est of 3 per 100,000) (USA). That is not even 1 per state. While this is a fleeting stat if you have some symptoms, however don’t lose sight of the fact that the odds are majorly in your favor. Need more statistics. I live in MN. There are aprox 5,800,000 people. The US population is 308,000,000. So MN has aprox 2% of the nations population . If there are 9,000 new cases of ALS (HIGH ESTIMATE of 3 per 100,000) That means there are only 180 New ALS cased in MN year (2% of 9000). And if you are below 40 (as I am) there is only a 25% chance. So in MN only 45 people below the age of 40 get ALS a year. 6) Twitches of any kind and for any duration do not equal ALS. If twitching =ALS than this disease would be extremely easy to diag. The 100% fact is Nuero don’t care about twitching. They care about weakness and changes on the EMG. Twitching in ALS is a byproduct of the disease not the precursor. 7) You didn’t have bulbar symptoms until after you learned about bulbar. Yep I have the tongue, throat, face and neck twitches. I have had swallowing issues and feel like I can’t get my works out. Why…because I was worried about bulbar….not because I had ALS. 
Don’t believe everything you read. You will drive yourself crazy ( I did) if you read everything on this board, ALS boards, personal ALS accounts, and other sources. I guarantee eventually you will find someone with the exact symptoms as you and this can lead you to a dark place. Know when you read this you are only getting 10% of all the info and truly have no way of knowing how closely related your symptoms are. Stay off the med help boards included this one. Come here for 6 months read, post, discuss but after that time you will have seen and discussed everything. 9) There is no magical date you will get over this. For me I thought “if I make it to 6 months than I will know nothing is wrong and move on with life.” Then it turned to 9 months and then at a year. The fact is no arbitrary date will magically make you feel better physically and mentally. While it is important to look back, don’t fall into the trap of believe all of your problems will be solved if you make it to X date. The fact is the date your MD and neuro say you are fine, that is the day you can start to get over it. 10) Keep a journal of your symptoms 3-6 months. You don’t have to write a book but jot down what is bothering you. That way you can go back to it when you think you have a new symptoms . You will be surprised what you wrote and you will find that your “new” symptoms were there before you just didn’t focus on them. 11) Ask yourself where are the people who came around hear 2,3,4,5 years ago? Some of them are still around to help newbies, and others pop in to give updates, but most of them have moved on. Do they still twitch? Most likely, however they have learned to live with it and move on with life. That should give you hope that someday you can look back 2,3,4,5 years from now and say “I have learned to operate with my new normal condition.”12) Believe your family, friends, and doctors. You are not in a mental state of mind to see things clearly. You cannot possible look at yourself objectively. So believe the professionals and the people who are closest to you. Right now they know you better than you know yourself. 13) Nothing in life is 100%. I say this because if you try hard enough you will find a case or two of people who “said” they had “BFS” and then got ALS. You may even find a few case studies that show someone had BFS and years later got ALS. Is it true…maybe…. But that doesn’t mean BFS leads to ALS. (people with BFS have the same chance of getting ALS as those who don’t. 1-3---in 100,000) What it means is nobody can guarantee you will not get sick at some point in your life. In fact will guarantee you will. However, thousands of people have BFS and it is not leading to ALS. Stop trying to find the exception. They are out there and it is not you. 14) Enjoy life. This is a cliché and is really hard when you are mentally and physically wrapped around the axle but you have to in order to survive. If you do have a deadly disease today is your best day, so enjoy it. I know that is not kindest advise but it is true. PM me if you like as I am here to help but I try to take my own advice and stay away as much as possible. P.S a veteran poster named mariomangler was very helpful in my recovery. (I don’t think he is around anymore) Not because I personally talked to him or corresponded with him over email, it was because I read almost everything he posted. I suggest you do the same. Use the search function on this board and read people who lived through this before you. Mario if you are out there….Thank You! (others on the board like Robbiebfs, darr, simon w, and Barbie really know their stuff. Listen to them)
Don’t believe everything you read. You will drive yourself crazy ( I did) if you read everything on this board, ALS boards, personal ALS accounts, and other sources. I guarantee eventually you will find someone with the exact symptoms as you and this can lead you to a dark place. Know when you read this you are only getting 10% of all the info and truly have no way of knowing how closely related your symptoms are. Stay off the med help boards included this one. Come here for 6 months read, post, discuss but after that time you will have seen and discussed everything. 9) There is no magical date you will get over this. For me I thought “if I make it to 6 months than I will know nothing is wrong and move on with life.” Then it turned to 9 months and then at a year. The fact is no arbitrary date will magically make you feel better physically and mentally. While it is important to look back, don’t fall into the trap of believe all of your problems will be solved if you make it to X date. The fact is the date your MD and neuro say you are fine, that is the day you can start to get over it. 10) Keep a journal of your symptoms 3-6 months. You don’t have to write a book but jot down what is bothering you. That way you can go back to it when you think you have a new symptoms . You will be surprised what you wrote and you will find that your “new” symptoms were there before you just didn’t focus on them. 11) Ask yourself where are the people who came around hear 2,3,4,5 years ago? Some of them are still around to help newbies, and others pop in to give updates, but most of them have moved on. Do they still twitch? Most likely, however they have learned to live with it and move on with life. That should give you hope that someday you can look back 2,3,4,5 years from now and say “I have learned to operate with my new normal condition.”12) Believe your family, friends, and doctors. You are not in a mental state of mind to see things clearly. You cannot possible look at yourself objectively. So believe the professionals and the people who are closest to you. Right now they know you better than you know yourself. 13) Nothing in life is 100%. I say this because if you try hard enough you will find a case or two of people who “said” they had “BFS” and then got ALS. You may even find a few case studies that show someone had BFS and years later got ALS. Is it true…maybe…. But that doesn’t mean BFS leads to ALS. (people with BFS have the same chance of getting ALS as those who don’t. 1-3---in 100,000) What it means is nobody can guarantee you will not get sick at some point in your life. In fact will guarantee you will. However, thousands of people have BFS and it is not leading to ALS. Stop trying to find the exception. They are out there and it is not you. 14) Enjoy life. This is a cliché and is really hard when you are mentally and physically wrapped around the axle but you have to in order to survive. If you do have a deadly disease today is your best day, so enjoy it. I know that is not kindest advise but it is true. PM me if you like as I am here to help but I try to take my own advice and stay away as much as possible. P.S a veteran poster named mariomangler was very helpful in my recovery. (I don’t think he is around anymore) Not because I personally talked to him or corresponded with him over email, it was because I read almost everything he posted. I suggest you do the same. Use the search function on this board and read people who lived through this before you. Mario if you are out there….Thank You! (others on the board like Robbiebfs, darr, simon w, and Barbie really know their stuff. Listen to them)
) And yes, everything you wrote is 100% accurate. It's also a lot more diplomatic than the "Go outside and get a life" advice I tend to give these days. Glad to hear my old posts have actually helped for somebody.BFS sucks, but at a certain point it just isn't worth even thinking about anymore. Once you get to that point, you are officially "cured." The key though is finding how long that will take for you. Some people just get tired of sounding whiny faster than others do. I know I hated how I sounded in my early days of BFS, so for me it all happened pretty quickly. For other people it might take longer. But it -will- happen. Make no doubt about it, it will happen for everyone. Eventually you will get sick of hearing how you sound when you are whining about having BFS, and you will just stop doing it. And then your family and your friends will all thank you and say "Hey, welcome back!" 
As for me? 3 years in. Much better. Don't even think about this board anymore.BFS is definitely annoying but it really doesn't warrant even a second of your anxiety because it aint gonna kill you.-Mario
. Anyways a WIN-WIN!!!!- I wanted to say congrats on the 1 year, but you were right on. It's just a number...and in a ways a slippery slope to not moving on since the doctor's dx is all that counts.ditto Darr - Mario is a jedi on this site.