About Bart1

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About Bart1

Postby Noturnus on July 4th, 2010, 3:55 pm

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.
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Re: About Bart1

Postby sylvia on July 4th, 2010, 5:18 pm

there has been another thread about bart a few weeks ago, viewtopic.php?f=4&t=12071#p85403.
nothing to add i think....
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Re: About Bart1

Postby simon_w on July 4th, 2010, 5:34 pm

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.

Cheers
Simon
Fascics since Sep 08 when aged 44. Abnormal EMG (denervation/reinnervation L quads); brisk reflexes R arm on one clinical exam. Health anxiety in early stages, less so now
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Re: About Bart1

Postby wwmm on July 4th, 2010, 8:14 pm

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.
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Re: About Bart1

Postby simon_w on July 4th, 2010, 9:05 pm

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 Arron and Gary.

Cheers
Simon
Last edited by simon_w on July 4th, 2010, 10:17 pm, edited 3 times in total.
Fascics since Sep 08 when aged 44. Abnormal EMG (denervation/reinnervation L quads); brisk reflexes R arm on one clinical exam. Health anxiety in early stages, less so now
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Re: About Bart1

Postby mahwah4me on July 4th, 2010, 9:13 pm

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.
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Re: About Bart1

Postby megan on July 4th, 2010, 10:39 pm

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
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Re: About Bart1

Postby mariaj on July 5th, 2010, 3:41 am

simon_w wrote:
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.



I'm only speaking from an observers point of view in that my mum had ALS. Fasciculation are not the first symptom in most cases. My mum showed signs of weakness probably 1 year prior to her diagnosis, if not longer. She was referred to her neuro because of weakness issues. I quizzed her on the twitching and she said she didn't feel them and that she never even noticed any twitching at any stage. I'm sure that this is typical of most ALS sufferers. Before mum died I attended a program with our local MND association with regards to caring for an MND sufferer. There were other family members there of other MND sufferers and we were talking about the fasciculations and it was evident that it was weakness that was the first symptom and fasciculations were not noticed first. Through my experience with mum I have met others that have been affected by MND and it is weakness that strikes first and it is that that leads a sufferer to a doctor. As part of my mums care we used to regularly get a MND nurse to come over and check on mum and on various occassions we discussed what comes first and overwhelmingly it is weakness.

I really think we as a forum should accept what our neurologists say. Acceptance can go along way in helping you return to a normal life, albeit a twitchy one for however long it hangs around. Excessive worry over one isolated statistic could set you back. Think positive, forget about adding extra worries.Worries and fear will only fuel your twitching. Believe me I could start making myself sick by thinking "do I have the familial form of MND? Do my children?" My twitching has stopped but who knows what is ahead for me. I don't know and I don't care. Listen to Simon, he is right.
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Re: About Bart1

Postby Noturnus on July 6th, 2010, 6:09 am

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.
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Re: About Bart1

Postby jro on July 6th, 2010, 7:25 am

Noturnus,

The information you provided about Bart1'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.

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Re: About Bart1

Postby MarioMangler on July 6th, 2010, 11:23 am

I was actually waiting to see a reply from an old-timer


Plenty of old timers have commented on Bart's issues before. Just not in this thread.

Caveat Emptor.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: About Bart1

Postby RobbieBfs on July 6th, 2010, 1:05 pm

:mrgreen:
Last edited by RobbieBfs on October 28th, 2010, 9:21 am, edited 1 time in total.
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Re: About Bart1

Postby Antne9 on July 6th, 2010, 1:09 pm

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
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Re: About Bart1

Postby AndyTwitchalot on July 6th, 2010, 1:51 pm

I spoke with Bart quite a bit on the ALS boards. He was never diagnosed and he has never returned to let anyone know how he's doing.
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Re: About Bart1

Postby RobbieBfs on July 6th, 2010, 2:06 pm

:mrgreen:
Last edited by RobbieBfs on October 28th, 2010, 9:36 am, edited 1 time in total.
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