My Mums Health: A Story

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onesMJonesy

Active member
Hi All,I think my post will upset some of you. I believe this website has been created in good faith and for good reasons. However in my case it has contributed to my nervous breakdown. I'll start by telling you my story. About 2 years ago,or thereabouts, my mum started to complain of weakness, speech difficulties and all the symptoms that we are afraid of. My mum went to her GP many times but there was no diagnosis. I got fed up and told her to ask to see a neurologist. This she did. Within 5 minutes she was pretty much diagnosed with ALS. We were told she was fasciculating everywhere. She was then referred to another neuro for a firm diagnosis. He did all the appropriate tests and he diagnosed her with ALS. By this stage I had been googling for 9 months, all pointing towards MND. During that 9 months I was chronically worried about mum. 2 weeks prior to her diagnosis I freaked out as I realised that *beep* this was ALS. I then became symptomatic and started to twitch. I contribute totally that my anxiety was the catalyst for my twitching. I blame myself enitirely for my condition.With all of this happening I found this website. I thought that it would help me somewhat. My anxiety spiralled out of control. I was twitching like crazy. I saw 2 different neurologists, did all the appropriate tests, and they told me I suffered from anxiety. No mention of BFS. One neuro said to me stay away from the internet, you're highly strung, work on your anxiety. But no I gravitated towards this site. As I looked at various posts I saw a group of people that were scared of MS and ALS. It seemed to me that no one seemed to think of ways to help stop twitches or how to get rid of the anxiety and live happily with the twitches. I was confused. People on this site were using various medications to no avail.It seemed to me that no one could recover from these twitches. I was petrified. Do you not agree with me? It just seemed to me and still does that this site is full of people that are worried about ALS and MS. I was convinced that I would be stuck with this wretched twitching forever. This made me even more anxious and hence more twitching. My anxiety over this ruined my family life plus I had to help look after my mum (BTW she is still with us God bless her soul). Lucky for me my husband supported me even though he didn't really understand what was going on. All I could see on this website were comparisons over the different types of twitches, comparison to ALS twitches and nothing positive. I spiralled out of control. I didn't seem to see anyone that recovered from these twitches. All I saw were frightened people like myself with no hope. It seemed to me that no one seemed to think anxiety was responsible for twitching. I understand anxiety is the common denominator for most of us twitchers regardless of the cause. I'm not writing to debate about causes. It is not my intention to ram down your throat my anxiety theories. Is there no one out there that thinks if we can eliminate anxiety that perhaps the twitching may disappear over time and just fizzle out? Those that live with the twitching without anxiety I congratulate you. I am not one of these people. So my next step was to tackel my anxiety. I remember a post written by Kevintwister on this site that with the right help he conquered his twitches. He used the good people at the Anxietycentre.com and they helped him to reclaim his life twitch free. I decided to do the same thing and I feel so indebted to him and the anxiety centre for helping me. I am recovering but slowly. I have my days where I feel like I'm going nowhere. However I have days where I feel great. During those days I am twitch free. Do you know how good that feels? Anxiety recovery is a back and forth process. 2 steps forward one step back. Often the one step back makes me feel like I'm back to square one however the days that I'm anxiety free and twitch free are just so lovely. I've gone from anxiety hell to anxiety pugatory with glimpses of heaven. My counsellor has been fantastic. She recognises when I'm going backwards and she is there for me. Also a pill does nothing for anxiety. It is a behavioural disorder.All of you look at yourself and ask are you anxious over twitching. I'd say a good percentage of you are. Well do something about it. Stop reading fearful posts. I read so many posts that were fearful and these posts over time brainwashed me. I'mstill trying to get the BFS demons out of my head. Personally I think anxiety caused my twitching. Don't let the posts on here affect you like it has me. Every time I look at posts on this site I feel sick. I can't help it. It scares me. As a result this will be my last post. I don't intend to read any responses. Oh and one other thing, for those of you that go to ALS forums and make comments, you are disgraceful. These poor ALS sufferers are leaning on each other knowing that they have a death sentence. How do you think they feel when a benign twitcher,like myself, asks them about their twitches and symptoms? You have no idea what they feel. It would just be heaven if all they had was benign twitches. If you have questions about ALS go and ask a neurologist, leave the ALS sufferers alone. I see from my own mums experience what a battle ALS is. Stay away from ALS sites you are not welcome.Maria
 
Hello,My problem with these two posts is I see an underlying assumption it is anxiety linked. In my case I believe my twitching is caused by nerve damage caused by a herniated disk.I agree that I am more AWARE of my symptoms after going to this web site. BUT I also believe that I need to come to grips with my body and my life. I also hope, because hope springs eternal :rolleyes: that I will read a posting on this web site will provide additional information on a cure or at least a decrease in symptoms for me. Though if I look at it factually, this has not occured for me.I have said in the past that a 'cure' for BFS is when people no longer go onto this web site. If you look around there are not many vetrans. Why, because they have moved on. In many cases they are 'cured'. Then sometimes they relapse and you see a few posts, but usually the end up leaving again.If this site is not your cup of tea, cool. And if it makes your condition worse, by all mean it is not the right place for you.I sure don't want things to go worse for you. I want you to get better. -43RichyThe43rd
 
I just don't understand the arguement. If this site is so bad for some then why are you still here? I don't mean to sound mean, but this site has done wonderful things for a lot of people, including myself. I have been guilty in the past about complaining about this site, but I won't anymore. I would hate to see this site go down. I was a complete mess a few years ago until some great great people helped me out. Please be patient with this site. It is not that bad. Of course anxietycentre.com wants you to be there. They have advertiesment adds just the same. Aboutbfs.com is its biggest rival. (by the way I am a fan of that site also)It seems this place is like anything else in the world. It goes thru cycles. True lots of "biggies left" EyeoftheWild, kit...but they may pop in from time to time. Who knows? I imagine they check in secretly now and then. ;) To say that bfs is ALL anxiety is absured. Anxiety can be a cause for some, and for sure it makes bfs worse, but there are thousands of anxiety filled people on this earth without bfs. Also there are lots of people here that probably have something other then your classic bfs. Bfs itself has many levels. Any where from mild annoying to chronic life altering.If your opinion is that this place is bad, why are you still here? to save us? Do you really care that much? Maybe this is just fallout over the recent presidential elections. :p People can't relax and let others believe differently. Move on from this place and save yourself. Put this place far behind you. I wish you well.DD
 
u are DANGED RIGHT Maria DONT YOU APOLOGIZE To NO ONE. I left a post and Im leaving it AT that. YOU LIVE by ALS DAILY as your mother and us IDIOTS ARE WASTING these NEUROS PRECIOUS TIMES by running in there time after time to see if "maybe" we have weakness HOW SELFISH!I AM FED UP WITH THIS BOARD. I am so thankful for Alonzo and Gary who founded it but it comes to a point in time when this board is POISON.I said POISON!*HUGS* Mariaj YOU KNOW YOUVE ALWAYS BEEN THERE FOR ME. GOD BLESS YOUR MOTHER AND UR TIME YOUR ENDURING dont waste another SECOND ON THIS BOARD.Lovely
 
By all means those who do not like this site, hit the road, many have promised it many times, but you keep coming back to complain and harp on this or that, I am getting tired or your empty threats, leave and do not let the door hit you in the ass. I think this site it great, it saved my bacon when I was at a loss what was going on, I come here to talk with others who are going through the same thing, and help others new to the site who are in the same state of mind that I was when I first checked it out this site. Everytime I log on there is another piece of the BFS puzzle filled in. This site is great!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
I'm with Tom. Hit the road and don't let the door hit you in the twitching ass. The problem is insdie you. You probably will always twitch from now on. GET OVER IT. I made it through with equal or more sxs compared to some I have read. No I don't have anyone in my family that has ever had ALS. The site is fine. It just does not need people with mental problems. We can focus on the physical but some of you need more mentakl care than anything else. I do not mean that as an insult since I feelt your pain but I got over it. Take breaks and get your testing done. I can assure you we will all die at some point in our lives. If you can't handle that the tuough shyt. So don't mix your mental problems and start knocking the site because you have not been able to resolve your own personal BFS deamons. If you decide to leave then stay gone! Don't come back on your belly after you ripped this site appart. Deal with your own crap own your own.
 
Maria and Dee Dee.....shame on both of you. The people on this board are afraid of ALS because BFS has many of the same symptoms. We come to share our stories and hopefully reassure others once we've had enough time and experience under our belts to be rational. My neurologist said point blank that BFS is NOT caused by anxiety. It has a physiological reason behind it, most likely trauma from an injury or a virus. I feel terrible that Maria's mom got the diagnosis we all dread. She is the only one on this board to ever get it, to my knowledge. To say that because Maria did not find what she was looking for on this board does not mean that many others, including myself, have not. It's not the board, it's what you are needing and not getting that is the problem. I wish you health, I wish your mom a cure, and I hope that you get whatever it is you are needing on the anxiety board. I do NOT believe that my symptoms are caused by anxiety, so for me to spend any time on that board would be as much a waste of time as you spending any further time on this one. Shauna
 
Kevin, I agree with some of what you posted. But, I think BFS is usually caused by something...be it an electrolyte imbalance, a thyroid issue, another autoimmune problem, lyme disease etc. However, it is definitely exacerbated by anxiety. Anxiety feeds the condition and I agree it is certainly not healthy to dwell on each twitch/cramp and spend hours and hours daily on the internet googling frightening diseases.As for your wife and the fibro. I don't believe Fibromyalgia is anxiety based, except for the fact that anxiety causes more tension in the muscles and that can cause more pain. I was diagnosed with Fibromyalgia in July 2008, but mine was caused by thyroid problems and low Vit D levels. I have been working on these 2 issues and my Fibromyalgia pains are much, much better. I think usually there is an underlying medical cause for Fibromyalgia pains. It's unfortunate that many people suffer from Fibromyalgia and never get to the root of the problem. Fibromyalgia is a very painful and sometimes debilitating disease and while I'm glad your wife is better, it needs to be said that many people can not just "will" it away or attribute it to anxiety. This does a disservice to all those who contend with Fibromyalgia on a daily basis and are actively striving to get well.Linda
 
No Anxiety when i had my onset...infact i'm so laid back i'm almost horizontal....my onset occured a month after my first ever flu jab at the same time my daughter picked up infant parvo virus at a nursery...then i had a week in bed with a virus....the rest as they say is history.The condition i have can feed anxiety ...i wouldnt say Anxiety as been the cause.
 
Kevin, to say that this illness is the result solely of anxiety is not giving enough credit to the illness. It is also not rational to assume that there is no such thing as post viral syndromes. So for all the people that had polio, they simply were too anxious to recover from "post-polio syndrome"? You are assuming that the word SYNDROME implies the body's inability to heal from a virus due to anxiety. That's absurd. I believe anxiety plays a part in BFS due to the nature of the nervous system and the disease that BFS mimics. Why would it not? My symptoms began similar to Tom's. I had a bout with Parvo virus....and then West Nile. Tested positive for both with serum tests and they are both viruses that replicate in the CNS. SOOOOOOO.....consequently my nervous system is fried. I began with the stiffness.....started to fasciculate.....my GP sent me to a neuro who did the EMG and the WNV test....and VOILA! Benign fasciculations. My neuro did not use the word syndrome either but I believe it applies because there are a myriad of other symptoms that go along with this. Not just twitching. If the anxiety board helped you, perhaps your problems are anxiety. Mine are not. There are a host of other people on here with a true physical dysfunction......so......we will all deal the best we can without being labeled or categorized.
 
Hi Double D,Thanks for the detailed reply. Nothing you mentioned has made me think you may have something different going on. Man, I was just like you. I couldn't even take a walk down the street without coming back and having every muscle in my body hurt and being sore all over. That was awful and was the worst time of my life. I was in living hell with this.I also want to point something else out that might interest you. I honestly don't know why this is but in most cases anti-anxiety meds don't eliminate the physical symptoms of anxiety. You would think they would but they don't. That was the case with me and almost everyone else I have conversed with on the internet. There are lots of people on the anxietycentre.com board that complain of physical anxiety symptoms yet are on meds like Lexapro. I think they help you calm down and function (if you are really bad) but they don't eliminate the underlying fear, concern, and worry that plagues anxiety prone folks. Taking a pill will not change your thought patterns or cure someone of hypochondria which is an anxiety disorder. As long as those are there the symptoms will persist. I didn't start getting better until I got off the meds. In my case they were making me worse because I started fearing the meds.As far as a time frame, yep it takes a long time. From the time I was fully convinced of what was causing my symptoms and I really had a grasp on this whole thing (there were many times when I thought I did but I didn't) it took about 2 years for me to start feeling normal again. I went through stages of "acceptance" before I had really accepted. My therapist told me that as long as I had any lingering doubts as to what was causing my symptoms I would not fully recover. It is amazing how little it takes to keep one symptomatic after they have started. It may take a lot to get you started but it takes very little to keep it going once it is there.The mind is very powerful. Just thinking about this stuff will fire you up. Before I came back here I had not felt twitch in a good while. It's kind of funny to me now, however a couple of days ago (after replying here and reading other posts) I noticed my temple started twitching and last night and my calf muscle started with a slight twitch last night. Am I freaking out thinking "oh no, it's back!" or "I was never really cured"? No, of course not. I know what is causing it. I didn't realize it at first but coming back here is bringing back some bad emotions. Just thinking about "BFS" is reminding me of how I was before. Reading other people's theories is reminding me of how I thought I was damaged in some way (I thought my cause was due to some drug I was given. However when I was finally able to reasonably think about it, there were so many people with the exact same symptoms and were never given that drug I was given. Logically it wasn't that drug as every doctor was telling me. The common demoninator with everyone was most were hypochondriacs like myself and were dealing with heightened anxiety whether they could admit it or not). Obviously it is not healthy for me to be here. Just thinking about this stuff is creating unneeded stress and negative emotions, which is obviously affecting me hence the minor twitching. Once I close this browser and move on it will pass in a day or so, I am not concerned about that, it always does once you get to where I am at. Again, I want to be clear. I am not ruling out that there can't be other causes to this mess. I am not sure why some keep replying to me like I am saying that. However I think those people with those other rare causes are in the small minority. One only needs to be honest with themselves and examine what got them here, or what is keeping them here. Just look around at everyone else and think about it reasonably.I am fully convinced that the overwhelming majority of people that come to this site are staying symptomatic due to over stress, anxiety, negative emotions, etc whether they feel it or not. Stress overload, anxiety, depression, etc are at epidemic levels in the world. Anti-anxiety and depression meds are the most prescribed meds in the world. That should tell you something.I think I am fully done here. Again I hope I have helped some. I wish all the best.
 
I see a lot of comment on this thread already and I rarely make a post on these forums anymore because of the exact reason this thread has been created.I concur entirely with the original post, I believe that the vast majority of "sufferers" on this website are suffering from the symptoms of anxiety rather than any serious neurological condition such as MND or MS. However this is not to say that I dont believe this site offers support to people who are suffering with symptoms, I'm just not sure how well placed this support can be at times. I have been a member of these forums for many years and some of the people over the years do genuinely have some form of neurological condition...the amount of these that have been serious is minimal......minimal being the keyword there as I cant remember one case of a paranoid person coming on here who turned out to have MS or MND.I believe this site in the bigger picture to be part of the cyberchondria epidemic that has spread like wildfire over the last 5-7 years. My general opinion is see a doctor, if you aren't satisfied with his diagnosis then get a second opinion and leave the diagnosing to the people who are trained to give them.
 
This site lacks hope, because there is no need for hope! With BFS you dont need hope, you need to believe and threat the anxiety.
 
This forum helps more than it hurts, and by an individual basis it is a lifeline. If you follow some of the senior members posts from the very beginning you will see that most of them were just as worried at the beginning as anyone. As they matured in the BFS journey they found a way to give back to this community, and have done a darn good job in my opinion. If I could go back 4 years when all this started,I would have joined up immediately, but instead I spent the first 6 months of twitching attempting to figure this out with nothing more than my Primary care and neurologist, both who had never heard of Benign Twitching... so I was in a really bad place.. to top it off... I had a dirty EMG....This forum is a blessing, and I hope that it one day becomes recognized by the professional community... I had my Doc look at this site and he was impressed with the amount of people that have BFS.. if more Doctors knew about this forum, and would actually review some cases, they could perhaps better recognize and facilitate BFS'er that present to their practice.
 
Hi guysAn interesting thread...In practice I agree. I'm 9 months in and am well. As for causation I'm for post viral, plenty of clues about for that one. Its poorly understood so you'll get different opinions from "experts".I didn't start mentally recovering until I left this board. Having said that, I was extremely anxious and upset about it BEFORE I found aboutbfs. I think its a bad move to stick around, though I believe the moderators and founders are extremely well-meaning and if you're mentally robust its an interesting forum for discussion about causation.As for anxiety being the fundamental cause - No way. I've been fully over the ALS fear for 3 months, and I'm twitching worse than ever. I just don't care any more. I'd love it to go, but you've got to get on with life. I put mine on hold for 6 months which I'll never get back.All the best everyone.
 
A lot of people come to this board looking for help, support and answers. This board does just that for A LOT of people. There are plenty of people here that have come to terms with BFS. Takes my last thread I wrote just yesterday, I am an example of, "Life After BFS". Yes I still twitch but, you have to learn not to let it run your life. Please don't blame the board for someone or sometwo people not being able to get over their fears and anxiety. Sometimes it is not the board that is the problem.Gary,Could we start a new subject column called Life After BFS. To show all the scared people that yes there is life after BFS.Jen
 
I beg to disagree with the original post.I came to this board at the height of my anxiety about BFS nearly a couple of years ago, and whether I had been here or not, I would have had anxiety.What I found helpful was to know that I was not alone in my anxieties, and the connections I made between my symptoms and what I feared it might turn out to be.Of course it did not turn out to be anything nasty, and it is the fullness of time alone that has shown me that, but I still think this site is useful. I mean if people did not hang out here they would gravitate toward those other places they do not belong.There is hope, more hope than there is in the economy anyhow :)
 
Sorry but my feeling is that this board, in part, kept me from shooting myself and I mean that. Anxiety is a clear issue with the people here but that's because random muscle twitching is a symptom of als - that's just a fact which can be sugar-coated but remains true. So when someone googles their symptoms they discover motor neuron diseases which is a very serious confrontation. Many people say well it's a symptom but you could cough and coughing is also symptom of lung cancer. That's true. The difference is that everyone coughs but everyone's calves don't look like mine - like freakin' aliens are trying to crawl out of them. Muscle twitching apart from eyelids and a very rare twitch here or there is not common. Therefore, people tend to focus on a serious disease because these symptoms are so rare.I think the assessment that the board offers no hope, blah, blah, is totally inaccurate. I found deep comfort in understanding that other people had my problem and lived to tell about it. Ginny (not sure if she still posts) reassured me and explained to me that her calves were doing exactly what mine were and she was ok even after a year or more.Frankly, I think it's a sweeping generalization also to imagine that every als patient is bothered by a question regarding their disease. I could easily imagine a sufferer of that illness finding great comfort in reassuring someone they were going to be alright - that their symptoms didn't fully match, etc. So I'm glad to see this person go who posted this originally. This is a meaningful board with a lot of valuable insight. It's true the focus is on als in many ways but that's because in the rare case whereby you confront that illness you realize you are unlikely to live much more than a few years. If you knew the twitching was definitely benign, that you could twitch like crazy and it meant nothing - then you would have no fear at all. The fear and anxiety come because you may be facing death in short order. So overcoming this demon is very important and, I believe, critical to dealing with the anxiety.
 
Hi all~~ I happened to be searching some old posts, and came across this one, and I HAVE to respond. I know the original poster won't be reading this, but I wanted to post it anyway in case some newbies are coming on here. I cannot understand for the life of me why anyone wouldn't want this board to exist, just because they personally don't find it to be helpful. How do you know it's not helping many other people? The reasons for having twitching and other symptoms that we discuss on here are so widespread, it would be impossible to capsualize the reasons for them. There are so many different theories, and coming on here helps people discover what might be their problem. Ultimately, we are all adults, and WE should decide in our own personal cases if and when it's time for us to move on. It's almost a scary proposition to suggest that we banish this site because we feel it's poison. Along those lines of thinking, why not live like the Nazi Germans, and do whatever someone else tells us to do?? I WANT to have the freedom to come on this site if I want to!! If it's helping me, then I will continue to come on, and if not, then I won't. It's my freedom to do either. From my perspective, this board was nothing short of a total LIFESAVER. There were times I seriously wouldn't have been able to function had I not come on here and gotten reassurance from the great people on here. And, when I mean function, I mean being able to take care of my kids, my family, my home. I wanted to roll up into a ball in my bedroom after googling my symptoms, and this board absolutely saved my family life. I owe this board my sanity right now. We live in a world where one can google almost anything, and even though people on here say time and time again not to google anything, it's obviously much easier to get medical information these days, and that is progress, I mean, it is what it is. So, to offset the information we get from google, thank GOD for boards like this to help us calm down. This board is personal, and the people on here are great. Some of those sites that we have all ended up on from time to time feel so cold and terrible, like there is nobody to turn to. There are some sites that offer a 'doctors' advice for 20 bucks or something, and that is awful too because not only to the 'doctors' give terrible advice, but it's short and not helpful. This board is an ongoing support community for many people that need it desperately. Just because it doesn't work for you doesn't mean it doesn't work for everyone. If you find the board so offensive and unhelpful, then it's easy. LEAVE. Isn't that great?? That's what makes America free!! Guess what?? Nobody's holding a gun to your head!! Don't come on here!! Frankly, we don't need the negativity anyway. I can't even tell you how many times I have searched my old posts, and felt so much better. I would say something to my family, like, "I've NEVER had this before"...and not believe them when they would tell me that I had. Then, I would come on here, search my old posts, and realize that I had experienced it before. And, as for going on the ALS sites, I'm sure the people on the ALS sites have plenty to worry about in their own lives than people with BFS coming on their site. I never have personally posted on an ALS site, and have avoided them because I get too scared. But, most of us here understand the fear that can grip someone going through the range of symptoms that we discuss, and that person wouldn't be going on an ALS board to be cruel, but to understand a disease that they are afraid of. I don't really understand the anger towards this....would it be different if someone went on an Ovarian Cancer board and discussed symptoms of this that they are having there?? ALS must be a horrible thing to live with, but I would think that people would be more than happy to help someone out that is afraid of having the disease. They were in that persons shoes once, hoping to not have it, but having some symptoms, so I would think more than anyone, that they could relate. Personally, though, I found it easier to stay away from such sites just because it fostered such fear in me, and still does. This is why the BFS board exists in the first place, because we are not talking about having some simple thing here, we are talking about a very dreaded disease that creates fear in many people. I know a lot of good people who at one time or another were fearful of having some kind of NMD. I hope this board stays around, and I hope some people aren't selfish enough to want it gone, just because they personally don't believe it works. Those types of people might not want to stop here, they could police the internet and shut down all kinds of offensive sites!! Of course, this site is far from offensive, and incredibly helpful to most who come on here. With all the sensationalism in the news now, it's very hard to get good information, and you can find it on here. For instance, you might be watching Dr. Phil, or Oprah, or Inside Edition, only to find out that Michael J. Fox's ONLY symptom was a twitching finger, and then you're in a panic! Coming on here settles you down, and you can find out information about BFS and other related syndromes by reading other posts and other people's experiences, which is so valuable. Thanks to this board and all the people on it, and all the people involved in creating it!! You have saved my life!!! Val
 
Hi all~~I happened to be searching some old posts, and came across this one, and I HAVE to respond. I know the original poster won't be reading this, but I wanted to post it anyway in case some newbies are coming on here. I cannot understand for the life of me why anyone wouldn't want this board to exist, just because they personally don't find it to be helpful. How do you know it's not helping many other people? The reasons for having twitching and other symptoms that we discuss on here are so widespread, it would be impossible to capsualize the reasons for them. There are so many different theories, and coming on here helps people discover what might be their problem. Ultimately, we are all adults, and WE should decide in our own personal cases if and when it's time for us to move on. It's almost a scary proposition to suggest that we banish this site because we feel it's poison. Along those lines of thinking, why not live like the Nazi Germans, and do whatever someone else tells us to do?? I WANT to have the freedom to come on this site if I want to!! If it's helping me, then I will continue to come on, and if not, then I won't. It's my freedom to do either. From my perspective, this board was nothing short of a total LIFESAVER. There were times I seriously wouldn't have been able to function had I not come on here and gotten reassurance from the great people on here. And, when I mean function, I mean being able to take care of my kids, my family, my home. I wanted to roll up into a ball in my bedroom after googling my symptoms, and this board absolutely saved my family life. I owe this board my sanity right now. We live in a world where one can google almost anything, and even though people on here say time and time again not to google anything, it's obviously much easier to get medical information these days, and that is progress, I mean, it is what it is. So, to offset the information we get from google, thank GOD for boards like this to help us calm down. This board is personal, and the people on here are great. Some of those sites that we have all ended up on from time to time feel so cold and terrible, like there is nobody to turn to. There are some sites that offer a 'doctors' advice for 20 bucks or something, and that is awful too because not only to the 'doctors' give terrible advice, but it's short and not helpful. This board is an ongoing support community for many people that need it desperately. Just because it doesn't work for you doesn't mean it doesn't work for everyone. If you find the board so offensive and unhelpful, then it's easy. LEAVE. Isn't that great?? That's what makes America free!! Guess what?? Nobody's holding a gun to your head!! Don't come on here!! Frankly, we don't need the negativity anyway. I can't even tell you how many times I have searched my old posts, and felt so much better. I would say something to my family, like, "I've NEVER had this before"...and not believe them when they would tell me that I had. Then, I would come on here, search my old posts, and realize that I had experienced it before. And, as for going on the ALS sites, I'm sure the people on the ALS sites have plenty to worry about in their own lives than people with BFS coming on their site. I never have personally posted on an ALS site, and have avoided them because I get too scared. But, most of us here understand the fear that can grip someone going through the range of symptoms that we discuss, and that person wouldn't be going on an ALS board to be cruel, but to understand a disease that they are afraid of. I don't really understand the anger towards this....would it be different if someone went on an Ovarian Cancer board and discussed symptoms of this that they are having there?? ALS must be a horrible thing to live with, but I would think that people would be more than happy to help someone out that is afraid of having the disease. They were in that persons shoes once, hoping to not have it, but having some symptoms, so I would think more than anyone, that they could relate. Personally, though, I found it easier to stay away from such sites just because it fostered such fear in me, and still does. This is why the BFS board exists in the first place, because we are not talking about having some simple thing here, we are talking about a very dreaded disease that creates fear in many people. I know a lot of good people who at one time or another were fearful of having some kind of NMD. I hope this board stays around, and I hope some people aren't selfish enough to want it gone, just because they personally don't believe it works. Those types of people might not want to stop here, they could police the internet and shut down all kinds of offensive sites!! Of course, this site is far from offensive, and incredibly helpful to most who come on here. With all the sensationalism in the news now, it's very hard to get good information, and you can find it on here. For instance, you might be watching Dr. Phil, or Oprah, or Inside Edition, only to find out that Michael J. Fox's ONLY symptom was a twitching finger, and then you're in a panic! Coming on here settles you down, and you can find out information about BFS and other related syndromes by reading other posts and other people's experiences, which is so valuable. Thanks to this board and all the people on it, and all the people involved in creating it!! You have saved my life!!! Val
 

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