ALS Diagnosis: One Mans Story

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Nocturniscope

Well-known member
I do not want to scare anyone here, because he is the only one on this forum who got what he got and the fact he got als does not mean there will more people who will get it too. I saw 2 posts of him on the als forum and he says that he was finally diagnosed with als. If you go to the forum and look for him, you will see in his profile the date he was diagnosed.
 
I just had a quick look through the ALS forum referred to. As far as I could read, Bart said that he had been labelled as 'possible ALS' but I did not see anything to confirm that the diagnosis was definite, although he has quoted a date of diagnosis in his details, so maybe I missed the relevant post. But I am still not 100% convinced that he does indeed have definite ALS and I certainly hope for his sake that he doesn't. I have had fasciculation and other symptoms for over 21 months now and have had worsening of muscle pain/ cramp etc this last few weeks. I note that he had had similar symptoms for 22.5 months when he was diagnosed with possible ALS so I'd have to admit to feeling a little nervous when I read his information.I don't look at the ALS forums but Bart is about the only person I have come across who has been diagnosed with BFS then told later on he has ALS, so I can only assume that this is very rare. I would be interested to hear what others think, particularly the moderators of this site, given the potential for this news to worry a lot of peope.CheersSimon
 
This is really scary b/c the one thing everyone on this board seems to take comfort in is that getting some time behind you from the start of symptoms is a real way to know that you are ok. We all know that doctors and tests aren't 100% but time and no disabling progression should be a true marker of nothing sinister going on. However, when you read that someone may have been misdiagnosed for almost two years it really can take the wind out of your sails (at least for me.) It seems like there is a lot of speculation about this user - I don't know him so I wouldn't even begin to render an opinion. All I can say is that I truly hope that he does not have ALS. I wish that could be confirmed for all of our mental well being too. I have to admit that I'm a worrier by nature and am having trouble focusing my mind away from the fact that my symptoms could point to Parkinsons (that's my fear more than ALS) and this post really makes it harder to try and redirect my mind elsewhere.
 
I've just been for a jog (or at least tried to - pain from a cracked rib from a soccer game on Saturday made it more of a fast walk! But the fact that I did play soccer on the weekend and can still walk/ jog in my lunch hour is something worth celebrating, even though my calf muscles and feet were rather painful as a result of this activity) and I was mulling over poor old Bart's situation as I jogged along. I was thinking in particular of the worry that this sort of information can cause to people like us who have been told that they have BFS and that they have nothing to worry about. The following facts went through my head and I thought I'd share them because it may help but things in perspective.1. Fasciculation is categorically NOT the first symptom in most cases of ALS. Weakness or wasting are the first symptoms. There was one reseach paper that asked patients with confirmed ALS whether they recalled experiencing any fasciculation prior to onset of weakness etc and less than 10% reported that they had done (I think it was 6.7% from memory). The interval between onset of fasciculation and other symptoms was anything from a few weeks to a few months, the maximnum being something like 13 months and the mean being around 5 months. None of these patients had consulted with a neurologist or had an EMG prior to developing more sinister symptoms that took them off to the doctor. Chances are, had they gone to the doctor for a check up when the wtitching started but before other symptoms were noted, the neurologist would still have detected an examination abnormality and/ or the EMG would have been abnormal. I think that ALS affects something like one in 50 000 individuals per year. so presumably less than 1 in every 500 000 people a year start twitching then go on to get ALS. So, for those of us who have been to neurologists and had EMGs, and for those of us who have had our symptoms for a reasonable length of time, the fact is that the odds are very very heavily in our favour that all will be well.2. There seems to be some uncertainty about Bart's actual diagnosis but if the worst case scenario is confirmed then it remains possible that he is someone who happened to have BFS who went on to get ALS, rather than it being the case that his fasciculation was an early manifestation of ALS. The likelihood of anyone of us (i.e. those with BFS) developing ALS is no greater BUT NO SMALLER either than anyone else in the world. Had Bart been a member of a forum concerning an unrelated health issue (asthma or something), we wouldn't be concluding that the two problems (asthma and ALS) were related to one another. If one in 50 000 people gets ALS each year, and if say 5 000 people a year joined this web site, we would expect about one of us every ten years to develop ALS.3. There is safety in numbers - many many people with fasciculation have joined this web site and the number of people feeding back a bad diagnosis is as close to zero as it could be. Bart's case would be among a very small handful of similar cases that I have heard referred to on this web site. Each case seems to be shrouded in a bit of urban mythology because details have been sketchy. Likewise, in the medical literature, cases of 'benign fasciculation' turning out to be 'not so benign' are sufficiently unusual and noteworthy to be written up as case reviews in neurology journals. If this alleged 'progression' from 'benign' to 'not so benign' were a recognised phenomenon, then no-one would bother writing about it in the journals (you don't see case reports of 'smoker develops lung cancer' or 'passing blood in stools found to be linked to bowel cancer' because this is recognised and common enough). On the other hand, there are probably thousands of people that have registered with this site and literally millions of people all over the workd right now with BFS who do not go on to develop ALS.As others have said, it would be lovely to hear that Bart doesn't have ALS after all - that the specialist has changed his mind or that he was not a genuine contributor to the various forums in which he has participated (I somehow doubt the latter) but I am guessing that we will never find out for sure. But even if we do, then I think that there is no reason for us all to fall into despair!Interested to hear what others think, especially people like Alonzo and Gary.CheersSimon
 
Hi Simon,I feel the same way you do. My cramps have increased, I am about 14 months into this so I am behind you, but I would also be interested to find out more.
 
Simon,I was actually waiting to see a reply from an old-timer, and I think your post hits this situation right on the money. I have nothing to add other than I think you are 100% right, and it was a great post.Megan
 
I am starting to thinking bart1 has emotional problems. He informed on his profile the date he was diagnosed with als some time ago. Today I went to check it again and he removed the date and now informed that he is undiagnosed.We have to be carefull how we treat people here on this forum. If some of us get too much anxiety and start to say things we should not, we have to stay calm and respect the moment the other person is having. All of us here are subject to get a new sign and become anxious at the point of starting saying things we should not. We all here are anxious persons and we should be always kind to those like us.I don't know anymore if he got his diagnosis or not. If he was still posting here we would have more information about him, but he is now posting on the ALS forums even when he is not sure if he has a diagnosis or not.If he comes back to this forum someday. Lets receive him with open heart. And lets be happy with his return.
 
Nocturniscope,The information you provided about BartOne's change is status is such great news. I corresponded with him two years ago when this all started for me and it has been hard to deal with what happened to him both in terms of worrying about my own situation and feeling terrible about how he was treated by some or how he felt he was treated. I agree 100% with your statements.I am supposed to be taking a break from here but as you can see it hasn't been that easy.Krackersones
 
Robby,I 100% agree with your last statement. This site has been crucial to my ongoing recovery, while at the same time, it has also been pretty hard to read at times. Other people's panic doesn't make your own get any better. Definitely a drawback. I find myself staying off for a while, especially when I feel good. The ultimate goal is to get off completely!-Ant
 
Look I've said it before and I'll say it again. Bart has a lot of red flags in his story and he got run off the bfs board pretty much for a reason. He had multiple accounts, he had different usernames, his story changed along the way, etc. His up and down mannerisms drove everyone crazy.I have nothing but good wishes for the guy, but when I'm harsh when I talk about him... I'm doing that for a reason. I'm not doing that to be mean to Bart. I'm doing that for the hundreds of OTHER people who I know are going to read this thread (and the other Bart threat, and the other Bart thread, and the other Bart thread, etc.) and are going to flip out and decide that bfsforum.com is too scary and they have to leave. That's the kind of sh*t that oldtimers see far too much on this board and that I try to help nip in the bud. The absolute worst thing you can have on here is a game of telephone where people start spreading rumors without taking the time to read all the past history. It happens way too much and-- as one of the few oldtimers on this board right now-- I try to stop it whenever I get the chance.Was Bart diagnosed with ALS? Who knows. He certainly wasn't diagnosed when he was on here. Oh sure, he might have diagnosed himself, but there have been plenty of people who diagnosed themselves with ALS and then came here and wrote about it and panicked everyone. You might want to research a certain crackpot named Carol (research "Carol's Story" sometime) and see how that one turned out. Guess what, she didn't have ALS. Self diagnosis that turned into a complete board panic. "Oops, sorry about that everyone. My bad. Sorry for scaring everyone."All I know is that Bart raised a lot of red flags when he was here and most of the old timers and admins got tired of his games and basically called him out on them. So he left and he went to the ALS board. Where, as Andy just pointed out, his "date of diagnosis" recently changed and then suddenly disappeared. Hmmm. Couldn't see that one coming. Like I said, I have nothing but good wishes for Bart and whatever issues he is dealing with. He clearly has some problems going on. But keep in mind, stuff he is posting on other sites is NOT relevant here and has nothing to do with YOUR bfs. It's complete apples and oranges. Whatever he's got going on is Bart's thing.There's nothing that drives an old timer crazier than when newbie posters bring stuff from other boards back and start writing about it here. That's the biggest faux pas 101 on this board and is the quickest way to drive everyone crazy. Look, this site is about bfs and is intended to support new and longtime bfs sufferers. It's not a place to write about things that aren't BFS and never will be BFS. Keep that in mind before you bring things from other sites and start talking about them here. That's the quickest way to get other posters to start ignoring you.When I post a harsh reaction towards certain things on this board-- remember-- it's not because I'm annoyed by a certain poster or because I think someone needs some "tough love." It's because I'm aware that hundreds of posters in the future are going to read this, and because I think they need some perspective on what they are reading. Nearly every single thing I write is intended not for one person, but for the good of the board. I always try to keep the big picture in mind before I write anything.And that's why I say not to waste your time obsessing over Bart's story. Let Bart obsess over his own issues. This story has nothing to do with you and your BFS. It's not going to have anything to do with you or your BFS either.BFS isn't scary at all. It's just BFS. Remember, you are the one who is making it scary.
 
Hello guys,Just wanted to take a second and remind everyone here that we are operating on the internet and people can say whatever they want....even if it isn't true. Now I'm not saying that BartOne is lying, I can't say for sure, but I personally don't believe he has als. That said, if he does, I feel terrible for him and his family. If he does actually have als, he is the first....not the first to make such claims, but the first to truly have received the dx. Over the years, there have been several members here that have claimed to have received the dreaded dx, but in all cases it was proven not to be true either by the person making the claim or other members here. I would also like to point out that some members actually have more than one user name and some post using different names. While I can tell who these members are, I generally don't stop them unless they are being mean spirited. Some people just need to start over on a public board like this sometimes, and I'm all for second chances. So just because you haven't seen a post from a certain user in a while, doesn't mean they aren't still active.....they just might have needed a reset. But I do monitor the board for bad actors/trolls and ban them when necessary. I can't, however, read every post so please don't hesitate to pm me if someone is being offensive or if you think something is out of line. I want this site to always be one of comfort and factual info for those suffering from BFS.Take care,Gary
 
Andy,Do you have any insight into why BartOne said he was diagnosed and then changed his status to not diagnosed? I'm asking you since you said you communicated with him. Even if you don't know for sure, your opinion may be helpful. I think there are enough people that really want to know the truth about this case. Maybe he had someone suggest he had ALS and that put him over the edge mentally but later someone more qualified perhaps took ALS off the table. If he has something other than ALS or BFS, his journey might be relevant to others here. Regardless of his dx, he seemed to really suffer from his symptoms and it always suprised me that he never too any meds for it despite the fact that he seemed to be utterly tortured with his symptoms. It really is too bad that he reaches out for help and then creates mystery about his situation for those that try to help him.Krackersones
 
I posted on als forums asking him to say if he got diagnosed or not. Other people there said that he is not posting since 12/2009 but he is accessing the site frequently. They told that on his last post he was not diagnosed yet. He even accessed aboutbfs site on 05/2010 (one month ago) So he is still coming here sometimes. 4 days ago I checked his profile and there was the date he was diagnosed. yesterday I accessed again his profile and that date was not there anymore?Why did he remove the diagnosis date? I think he is getting mixed opinions from his doctors and sometimes he thinks he got als and sometimes he thinks he did not got this. As the time passes and he is still in doubt if he has als or no, the odds is that he does not have it. When ALS begins, 6 months is enough for it to give no doubt.
 
We really don't know if Bart is telling the truth or not. Remember, he had different names on this board. Then your saying he said he had ALS now he is undiagnosed. You can't believe everything you read. My best advice.. .believe your doctors, not BartOne.
 
This was just posted by a particularly helpful member of the ALS boards:"Bart got his diagnosis of BFCS, even though he kept saying that he didn't have a firm diagnosis. It wasn't "firm" because for some odd reason, Bart couldn't and wouldn't accept it. He saw neuro's for nearly 2 years and their opinions didn't change.Go tell the people on the community that as far as we know, nothing has changed with BartOne."
 
I have been around this board AND the als boards for years. (Thank God i finally quit going to the als boards). Bart is not the first one to do these things, and definetaly not he last! I mean no disrespect to Bart but some people get to a point that they are convinced they have als or something else horrible, even though doctors tell them otherwise. They cannot disconect from als. When you do countless hours of your own research you start to believe you are smarter then the specialists. I have seen other post about people who were convinced 100% that they had als even though they did not have a diagnosis. I feel bad for bart. DD
 
There is a lot we don't know about BFS and, broadly speaking, fasciculations. I have some ideas, but it really does not matter! It is clear that they (the fasciculations...) have caused a lot of distress to many people because of the fear of what they may mean more than anything else. It happens that inevitably this is the fear of "the worse case scenario", albeit the reassurances of many neurologists. I remember BartOne very well and most certainly his fears have been sky high from the very beginning. I'm not aware of him being diagnosed with anything and the changing status above described as well as the lack of posts is in keeping with that. Bottom line is: the fear is really what has been freezing the thoughts of most of us and this is not quite right.In 3 years and half of dealing with BFS, I can confirm that nothing has changed as far as my physical performances go.Equally, I've understood that fasciculations are far more common than what I've initially supposed to be, but that most people would not care about it.And, as far as I know, is plenty of old timer such as myself, doing well.
 

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