Surviving ALS Anxiety: My Story

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Slypikos

Active member
Hello MatesAlthough I have been around for a year, I just became a member of this community. My short history is widespread fasciculations following five stresfull months due to healthy anxiety (I had urinary infection and neck problem), googling twitches and found the link about ALS and starting of the nightmare. So far I have been seen by five different neuros (three of them are ALS experts) and three EMGs done. All fine. But the problem is I can not be sure if fasciculations in ALS are due to dying nerve fibers or irritation of nerve fibers. There are two different ideas on this amongst different neuros. I am attaching a link below, which is a recent study done by doctors in Walton Centre of the UK. The study is about four people formerly diagnosed with BFS/BFCS and later developed ALS (3 to 4 years later). Therefore, these doctors are suggesting that the diagnosis of BFS/BFCS should not be made without 3 years follow up on the patients with fasciculations. This kind of uncertainity about the nature of these fasciculations concerns us and I believe most of us in this community have question marks about what is gonna happen tomorrow and the doctors are not able to give us a relief.
 
Well you have suceeded in heightening my anxiety levels 10 fold-thanks for that! (as if I am not anxious enough already) Will I go to the link-no. Did I wanna know-no .But I guess you have 'spilt the beans' in your post anyway'. Sometimes I wish I did not come to this board.... :rolleyes: RodgerPS someone game enough can analyse the research data -and hopefully refute it!!
 
I will not read this article either although I have a feeling its the same one Nocturnus posted a few weeks ago which started the fight of the century on this board. I agree with Rodger. This is why people leave this board. My advice is listen to your doctors not some article on the internet. Our twitches are not ALS. I am sure of that.
 
I read the article. Who cares. I agree with Barbie. Listen to your Dr. Whether the article is true or not, doesnt mean anything. Theres always exceptions to everything. I'm going to do a study on how many people started out with Hemorrhoids that later turned into ALS. Oh crap, I have Hemorrhoids, I guess Im a goner....
 
Korikos - it was kind of mean to post this article at a place where so many have health anxiety because it leaves so much open to question. Where some of us can read this stuff and go, "hmmm, maybe I should do a check-up once a year with my neuro", others will get very upset and see themselves immediately as a victim and as one of these few odd cases. Yes, we want to know info but most of us have no training in medical research and miss-read this stuff. Please read on to see why I say this.As far as the paper goes they are 4 cases out of thousands and they do not parallel most people here at all. Most here at the forum do not have a BCFS Dx (I do - perhaps I'm guessing only 10% have cramps here). The most outstanding thing to note is that these cases all had consistent problems that did not let up after starting, all had fatigue, and all had clinical wasting which was dx'd by an experienced neuro before their downfall: not by themselves looking in a mirror or self-testing. The researchers do not know that there is a correlation between the BCFS and the onset of neurological decline - the sample is just too small to say this and they are saying basically "look, we have to do follow-ups on these people". It could be that the 2 are not directly related. If they looked at all others that had als I'm sure they would find that a percentage of people also had diabetes or some other disorder first. Or 15% had car accidents beforehand, or 5% had dental surgery. When the author says "the combination of cramps and fasciculatons can result from diverse pathophysiological mechanisms" he means what he says: that they can't throw out the idea that it is a precursor but that it can basically mean anything. These people are medical researchers and these papers are written for their community not ours. They are looking at data and trying to see if it fits; they may throw this idea out next year when they find that say, 20% of als patients had head trauma before onset of symptoms and this is a stronger correlation. I know little about neurology but read a lot of research papers due to my work so I know that they are investigations NOT intended to change science but to notify other researches of findings that may or may not be disproved by further research. Please, everyone - realize these papers and their findings are NOT set in stone. If you have questions, and haven't been in a year, go to your neuro for a check-up and don't worry about this stuff.
 
Because this is a "forum" I think that any valid information should be shared with the community. I don't know how many of us are here only for the support and how many are here hungry for information about all things bfs (good and bad), I personally am in the "both" category but as a 21 monther, my leaning is now towards the "gaining knowledge" function of these forums. Hence, IMO is totally acceptable to post these types of articles. The title of our site says "A Community for BFS Surfferers" not "A Support Community for BFS Sufferers." Having said that, though, Slypikos should have used much more delicacy in putting this info out there. I read the article. Its interesting, but as Imok succinctly points out, these researchers were actively looking for cases so that they could publish a paper. These four cases are maybe four out of four million of us. I would take those odds in a minute. Plus the authors aren't saying that BFS leads to ***, they are just saying be vigilant. This is what my neurologist preaches, too. He is not worried about me getting something bad (BFCS is bad enough!), but he does like to ensure that we do semi-annual checkups for now so he can judge my symptoms for himself. (See my post about recent follow up)I know many or most of us here only want to hear good news about our conditions, but that isn't the way life works. There is going to be "non-good' news at times, BUT the thing to remember is that probably 99.95% of the posts about doctor visits, symptom management, diagnoses, ext. ARE POSITIVE. SO THINK POSITIVE!And if you are worried after reading the article, discuss it with someone who knows something about it: your neurologist (or whatever specialist you are seeing).
 
Well I am very sorry for scaring some people. It is my first time in the forum and I would not have expected to have such a negative impact. But please note that I do not post anything in a different forum and I do not have any other nickname. As you see I am in the same boat as you. I have twitched for a year now and after seeing five different neurologists and three EMGs without any fasciculations I have not been convinced yet that I have a benign condition due to the uncertain approach towards fasics by different neurologistsCan I kindly ask is there anybody in the forum from the UK?
 
I really dont care who posts what where, but since there are so many on here dealing with the anxiety aspect of this condition, it would just make more sense to me to have a specific area for information like this to be posted or maybe some kind of warning on the post, so some people can make there own decision to visit that part of the forum or not. Maybe I'm being too sensitive again, sure wouldnt be the first time, I just hate to see people get upset all over again over one measly, not so well done study, that wasnt even intended for our eyes anyway.
 
I've read the article, and I personally don't find it troubling at all. Yes, on the surface it sends up alarms, but as others here have stated, upon closer examination we are talking about just 4 people with the cramping variant of our condition.....now I'm lucky :mad: enough to have the cramping that goes along with this condition, but most here do not. Regardless, I keep going back to statistics/odds, and while I'm no math major, the very fact that a number as small as 4 seems so important to this study, gives me some mental relief when you think of so many people that have our condition. Along those same lines, a dx of bfs/bcfs doesn't exclude any of us from getting als. The fact is any of us could come down with als, I just believe that we are no more likely to than the general public. Probably the same thing happened to the poor folks in this study.Finally I would say, "don't shoot the messenger" if the post doens't appear to be mean spirited. We don't want to censor this site from valid information/research, because if we do the entire community looses credibility.Take care,Gary
 
Thanks IMOK for the analyse, appreciated. Acknowledge Korikos' intentions wre not to scare people, but even so did not help the 'worry wort in me'. And many newbies are on a knifes edge with this thing we have (just ask Robynn!). The last thing is..an analogy. When we go to the Drs for the first time does he/she give us worst case scenario for what we may( or may not) have.....No they dont, they go through a process...in a supportive/caring manner, with diplomacy. They know we are in a 'fragile' state and act accordingly AND they know worst case scenario is probably unlikey and the 'hypothetical' serves NO useful purpose.And yes if it comes to it ( after the process) they will give us the bad news, but only then. The point being that giving us 'worst case scenarios' in my opinion causes more harm than good, and if there are those that want to know the 'warts and all' go google, but let that be the individuals decision and not something forced upon us all. Some diplomacy please.cheersRodger
 
My thoughts exactly Rodger, very nicely put. I got my hands pretty full with the newbies these days and some of them are not members on here yet because there registration hasnt been approved just yet, I told them sometimes it can take several days, but let them know that they can read on here even with out being registered, so they see this stuff and then its that much harder on me to calm there fears that this truly is a benign condition and that there symptoms are normal. Once again, I'm not saying this site or board should be censored in any way, not what I was saying at all, but can we have a warning, or a place on the site for infor such as this, not everyone wants to know that info like this exist, some are doing good just coping with the fact that they caught some stupid virus, or they stressed for too long and now they got this crappy syndrome that we have all come to know as BFS.By the way, most of the newbies I have now, are not members here yet, I pull them from the ALS site, and try to get them on here, just incase anyone wondered what I'm doing. I also started a chat room for them so they have somewhere to go with there questions while they are getting registered here. The chat room is also for anyone who may be having a bad night and just wants to hang with others having a bad symptom day.Take care everyoneRobynn :D)
 
This site has been a great tool for me to cope with the onset of this crazy twitching and the axiety that came with it. Everyone that has strange things happen to them gets comfort in knowing that you aren't the only one, especially when fearful thoughts are associated with that condition. I have no issue with someone posting studies or articles about negative findings on any subject if that is how someone feels they need debate or get reassurance for their own peace. The reassurance i will offer to this post is that the disease that so many have passed from over many years and many thousands are suffering from now is not now or has never been a disease of twitching or sensory issues. Cramping and twitching are without a doubt a part of the disease but weakness is the hallmark symptom and the ultimate tragic end that it brings. It has been posted a thousand times by people and their neuro's here and no matter how you slice it twitching without clinical weakness, is just plain old irritating non harmful twitching. For every one article that talks about some poor soul that developed what everyone fears here there are thousand that would confirm that this study was an anamoly. Remember there is the RULE and there is always an EXCEPTION to that rule (however obscure). Don't cling or search for the exception you will never enjoy the moment your in. Not that long ago i would have never read that post but now i embrace it and say bring on more of them, face the fear and you will find peace. Out of a 1,000,000 BFS or BFCS's a max of 30 of those people will develop MND, those statistics are the same as every other person on this planet. Those statistics are published in the New England Journal of Medicine. Instead of spending time and energy disputing our doctors lets make sure we all do our part to support any effort we can to make that number zero in the very near future.
 
Sorry i wanted to clarify one thing, MND includes MS and ALS in that 30 and for those that need a little more number support that means 999,970 out of that million won't develop it. Hope that helps.
 
ALS is a Motor Neuron Disease (MND) and MS is considered a Auto-immune disorder or disease because it appears that the bodies own white blood cell (antibodies) cause damage to the nervous system, by attacking the myelin sheath. MS is not a MND. Just putting that out there so people dont get confused.
 
I totally agree with Robynn and Rodger. People come to this website for reassurance and support BECAUSE they´ve read all that scary stuff. No need to post more of that here. I didn´t read the article but your responses gave me an idea of what it was about and of course my mind started going in a very bad direction again. So once again: Support is what we need, not articles to fuel our anxiety.
 
Just to quote Wikipedias take on this site...where newbies could and would access this forum (as I did)'Many HEALTH ANXIOUS people are greatly HELPED by the website...with a wealth of knowledge on the condition with long term sufferers willing to HELP and CALM THE WORRIES OF PEOPLE MISTAKENLY FEARFUL OF HAVING ONE OF THE PREVIOUSLY MENTIONED DISEASES ie the 'nasties'Says it all really.....about what this site is supposedly all about..... :D) cheersRodger
 
Did anyone actually think that just because you have BFS means it is impossible for you to get ALS? My nuero told me that right after my CLEAN EMG. Direct qoute "you have as much chance of getting ALS as I do." Meaning this BFS is not a force field that keeps ALS away. So can people with BFS get ALS... Yes they can. (Just like people with diabetics can get ALS)HOWEVER THERE IS NO concrete evidence that shows BFS leads to ALS. In fact the overwhelming evidence from neuros, case studies, and this board points to the opposite.(it says these are separate conditions that dont appear to have a link) Just look at all the people on this board past and present that have BFS and to date we don't have any confirmed reports of them now have ALS. Sure there are one or two people who claimed they got ALS then never showed up again. (very suspicious) I agree with Gary and others. Let the evidence flow on this board. Ignorance is not bliss. If you dont want to know stuff then stop reading things on line (including this board) and asking your Neuro's questions. Just live and see what happens, but censuring information doesn't help anyone. Stay healthy my friendsMJC
 

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