Why is it so Hard to Accept a BFS Diagnosis?

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Why is it so Hard to Accept a BFS Diagnosis?

Postby elliottok on September 4th, 2014, 5:12 pm

Was just wondering today why it is so difficult for many people to accept a BFS diagnosis. We have many well educated people on this forum, yet we often have such a hard time accepting what our doctors tell us - that our condition in benign. Why is that? I personally feel that it's perhaps because when a physician tells us "you're okay" we somehow expect that our symptoms are going to disappear. When that doesn't happen, we begin the cycle of fear and doubt all over again. Perhaps the most difficult thing about BFS is accepting and recognizing that the word benign does not mean temporary or short lived - our symptoms may never get better or go away, and we have to learn to live with that fact. Anyway, I'd like to hear some of your thoughts.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby veryworried123 on September 4th, 2014, 7:04 pm

How can you forget about something when it reminds you hundreds or thousands of times a day

I think if that when away it would be easier to accept
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby Tohapane66 on September 4th, 2014, 7:23 pm

I would totally agree with these comments. Sometimes, I think the only test is time. Despite all the words of reassurance from the veterans, which are fantastic by the way, this is a struggle. I suspect even the wise words from the veterans come through the test of time. Eventually, the state of agitation/anxiety wears down as the days drift on. Finally, when enough time passes confidence grows, as if something sinister was going to happen it would have reared itself.

For the newbies, however, this is a real merry-go-round. As many have written here, symptoms chop and change get worse get better. I for one have been going 8 months and I’m not still not used to this thing. I feel some aspects of this condition are getting worse (eg pain in arms), some better. Although I still tick off the days, I am extremely thankful for this website as it provide me with solace in my times of struggle.

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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby physerv24 on September 4th, 2014, 8:12 pm

I agree 100%. Only being about 5 months in and having my EMG/NCS at 6 weeks does make it difficult. And yes, the symptoms do not get better initially, at least not for me. There are so many posts that conflict with respect to when the neuro's give you the all clear it makes each day feels like an eternity; 6 months, 8 months, 1 year, 2 years, etc. And you are so right with respect to being reminded of the condition every second of every day. I have not had a single day - not one - where my twitching has subsided or waned and when those twitches are too many to count, even in a 5 minute period, it only increases the anxiety. Having a condition that most docs, (other than neuros) and certainly our families and others closest to us, have never even heard of makes it that much harder. There are so many days that I feel like an alien among all those around me. People try to be supportive but they have absolutely no idea what this is like.

I saw a post from leaflea who suggested we all take a break until October 1st. Not me. I know there are those out there that will call me weak, but I need this board to keep my sanity. I don't search for posts that suggest something sinister may happen. To the contrary I search for posts that match my symptoms so that I can be assured I'm not alone. I'm 50 years old and there has never been a time in my life, and I mean never, when I have felt so helpless and out of control. I've never confronted something that, as of yet, I can't seem to gain control of. From the minute I open my eyes until I close them at night I am constantly reminded that something is not right; at least compared to everybody around me.

I can never say enough how much this board means to me. Thank you all from the bottom of my heart.

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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby Tohapane66 on September 4th, 2014, 8:56 pm

I hear you Vince

I feel like one weird alien with this condition, which very few can even begin to relate or empathise. When someone tells me to relax, I wouldn’t mind suggesting having a body swap and let them see how they would relax. I do my very best to relax (meditation, acupuncture etc), but I still dislike having my toes/fingers moving all over the shop when the fasciculations are strong. I also loathe being woken up in the middle of the night with thumping twitches in my torso somewhere. Most of all I dislike the sensory stuff, hot, cold, burn, pain, pins and needles, itch, tingle, buzz.

Like you I never had a time in my life where I felt this way. I have never been sick before this and took pride in keeping fit. Like you I look in hope that others experience the same, so I don’t feel like such an alien. This why this board is so great.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby johnnythejet on September 5th, 2014, 1:39 am

I've had BFS and been a member of this community for nearly 10 years. The first few years I was focused on beating my anxiety and learning as much as I could about BFS and associated subjects. Since then my focus has been mainly supporting others, and in my close dealings with so many sufferers I've had loads of time to reflect on this very question. Why do so many of us fall victim to the same irrational thinking? If you hang around here long enough, patterns within thread topics will emerge. The same symptoms, the same questions, and the same flawed thought processes. Many times I've referred to twitchers as clones. The number of times I've heard the exact same, specific fears or flawed conclusions is uncanny. When it comes to answering the question at hand, I believe a number of factors are at work.

1. Most of us are different than "normal people", and not just because we twitch. Something is wrong with our brains. We have some increased level of health anxiety, general anxiety, OCD, etc. We struggle mightily with the task of ignoring perceived problems with our bodies. I know plenty of twitchers in my personal life or some short timers here that don't have the same problem we do. They come to understand BFS is benign and then move on, or they never even cared to understand it. Many don't ever go to a doctor, let alone 5 doctors. They are the lucky ones.

2. For me, the week or so that I thought I had ALS was beyond explanation. I won't even bother explaining all the thoughts and intense emotions that whirled about during that period. What I do know is that from this crisis I was left with some sort of mental wound. The fear and panic was so intense, and stayed long enough, that emotional effects remained like a large, open wound that needed time to heal. It doesn't matter how many people told me "Its not ALS", or if I believed it because my mind hadn't healed. Even when I FULLY understood that I was 100% fine, my stomach would sink at the sight of a person in a wheelchair. As time passed, the wound healed slowly but remained for a couple years.

3. The nature of our symptoms is strange and unnatural. Although now I pay them no mind, it was once difficult to ignore them or view them at face value as harmless.

4. The existence and nature of ALS is problematic for us. If you google "muscle twitching", the search results pretty much indicate ALS all the way. Also, ALS is a diagnosis of exclusion, and we can't simply go in for a blood test and be given the "100% all clear" that same day. To make matters worse, much is not known or understood about ALS and people constantly spread half-truths and false information. Its very difficult for a person to sort through all the garbage and come away with the truth, and be confident with it (even when doctors diagnose as benign). The funny thing is that once you fully understand the natures and symptom patterns of both ALS and BFS, you realize they are NOTHING alike. Once I gained that understanding, I began to read others' symptoms and irrational fears and suddenly they seem crazy (even when I was once in those shoes). If ALS didn't exist or there was a cure for it, I believe most of us wouldn't be here.

Anyway, I could probably go on for hours on this subject but I"ll stop here. Great question, by the way.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby raindog on September 6th, 2014, 4:08 pm

johnnythejet wrote:I've had BFS and been a member of this community for nearly 10 years. The first few years I was focused on beating my anxiety and learning as much as I could about BFS and associated subjects. Since then my focus has been mainly supporting others, and in my close dealings with so many sufferers I've had loads of time to reflect on this very question. Why do so many of us fall victim to the same irrational thinking? If you hang around here long enough, patterns within thread topics will emerge. The same symptoms, the same questions, and the same flawed thought processes. Many times I've referred to twitchers as clones. The number of times I've heard the exact same, specific fears or flawed conclusions is uncanny. When it comes to answering the question at hand, I believe a number of factors are at work.

1. Most of us are different than "normal people", and not just because we twitch. Something is wrong with our brains. We have some increased level of health anxiety, general anxiety, OCD, etc. We struggle mightily with the task of ignoring perceived problems with our bodies. I know plenty of twitchers in my personal life or some short timers here that don't have the same problem we do. They come to understand BFS is benign and then move on, or they never even cared to understand it. Many don't ever go to a doctor, let alone 5 doctors. They are the lucky ones.

2. For me, the week or so that I thought I had ALS was beyond explanation. I won't even bother explaining all the thoughts and intense emotions that whirled about during that period. What I do know is that from this crisis I was left with some sort of mental wound. The fear and panic was so intense, and stayed long enough, that emotional effects remained like a large, open wound that needed time to heal. It doesn't matter how many people told me "Its not ALS", or if I believed it because my mind hadn't healed. Even when I FULLY understood that I was 100% fine, my stomach would sink at the sight of a person in a wheelchair. As time passed, the wound healed slowly but remained for a couple years.

3. The nature of our symptoms is strange and unnatural. Although now I pay them no mind, it was once difficult to ignore them or view them at face value as harmless.

4. The existence and nature of ALS is problematic for us. If you google "muscle twitching", the search results pretty much indicate ALS all the way. Also, ALS is a diagnosis of exclusion, and we can't simply go in for a blood test and be given the "100% all clear" that same day. To make matters worse, much is not known or understood about ALS and people constantly spread half-truths and false information. Its very difficult for a person to sort through all the garbage and come away with the truth, and be confident with it (even when doctors diagnose as benign). The funny thing is that once you fully understand the natures and symptom patterns of both ALS and BFS, you realize they are NOTHING alike. Once I gained that understanding, I began to read others' symptoms and irrational fears and suddenly they seem crazy (even when I was once in those shoes). If ALS didn't exist or there was a cure for it, I believe most of us wouldn't be here.

Anyway, I could probably go on for hours on this subject but I"ll stop here. Great question, by the way.


And a great Answer JTJ :D
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby readytocheckout on September 6th, 2014, 7:56 pm

I guess for me it's because my symptoms seem to be progressing and changing. It's not just twitching anymore, it's weight loss and 'feeling' weaker and and spasms and probably many other muscular skeletal things that probably happen as we age. I can see my hands becoming smaller but they still seem to work just as they always have except for stiffness in my right hand. I can see the weight loss in my thighs. You see, stiffness in my right hand that I didn't have before twitching started, just an example of a mind with totally wrong (I hope) thinking attributing everything to something nasty. Latest is why do I seem to now be getting bone pain in my shins and why has my butt become smaller just on the left side !! And why have my shins become so boney.

This whole syndrome totally messes with my mind. It isn't helped when I see my neuro with new or changing symptoms or worse swallowing but they're not interested. My BFS diagnosis is staying at that according to my neuro and sometimes I feel like they're simply dismissing me. But on the other hand if there was something that interested them then they wouldn't just dismiss it as BFS to allay my fears - would they?

One thing I have come to realise though, a psychologist isn't enough when the mind has been so worried for so long. Waiting for time to pass to see if I'm going to be ok is excruciating. I'm probably doing enormous damage to my mind and body with all this stress.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby Tohapane66 on September 7th, 2014, 3:06 am

Hi Johnny

Thanks for detailed answer here and your time devoted to the board. So too all the others like raindog and the countless others. It has been priceless for me.

I'm not sure I share your view on 1 though. Maybe it's true for some, but not all. I have had no health issues/anxieties prior to this, and I'm pushing near 50. This condition for me is confronting and I am sure it would be for most of the population if they had to deal with it. Of course this depends on the severity of the symptoms one is having to deal with.

The neurologist I saw did a study of people in the medical field who had fasciculations. Around 3/4 thought they had als even though given a bfs related diagnosis. So seems to me anxiety with this condition is understandable. How much anxiety and how we deal with it is critical to getting back to some sense of normalcy.

As for those that twitch away in ignorance, I only wish I would just twitch. The pain and stiffness is my greatest sense of frustration and concern. It is to the point that doing exercise, as much as I still try to do it, has become harder and also painful. And I really love to exercise. So this has been a bit of a life changer for me. I'm not saying that this is bad in long run, but right now it is taking time to adjust to the new me and it is causing anxiety. So right now I am very much at your point 3.

You have experienced and seen so much that it is clear and obvious for you to see the mental traps many of us fall into. You have got to this point through time. We tend to learn through our own experiences, that is why I think that time is still important for some (maybe not all). This is despite all the great advice you and others give. It is a mental block to overcome.

I totally agree with your point on 4. Dr Google is no doctor and the internet has no doubt driven many to unnecessary fear and anxiety. That said, the internet has also given us this forum and I'm very thankful for this place.

Thanks JTJ
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby elliottok on September 7th, 2014, 6:02 pm

Tohapane66 wrote:Hi Johnny


The neurologist I saw did a study of people in the medical field who had fasciculations. Around 3/4 thought they had als even though given a bfs related diagnosis. So seems to me anxiety with this condition is understandable. How much anxiety and how we deal with it is critical to getting back to some sense of normalcy.




I don't think you'd see this effect as much with neurologists as you do with other physicians. I think this is because most normal physicians (like most of the people here) know enough to know that fascics can be a symptom of something serious, but don't know enough to be able to differentiate between benign fascics and ALS fascics. My neuro for instance says he commonly get fascics, but since he does what he does for a living, he knows it's nothing serious.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby Little Lost on September 7th, 2014, 9:50 pm

Quote : I don't think you'd see this effect as much with neurologists as you do with other physicians.

Sorry but in the study 50% were neurologists, 20% GPs that had previously dealt with ALS/MND. patients, and Gastrointestinal consultant, and respiratory consultants were represented. Interestingly though no psychology professionals came forward.

My EMG doctor told me a funny story. She said she spends plenty of her time reassuring people that read their reports and see fasciculations, that they were benign and nothing to worry about. Then last year she was undergoing an EMG for a back issue and fasciculations showed up. All common sense went out the window and she found herself spiraling into a panic. Her husband who is also a neuromuscular specialist couldn't stop laughing after she phoned him and faxed him a copy of the EMG. It was the best think he could have done as it calmed her down. She had been prepared to throw all her training and vast experience out the window and convince herself she had MND. I.e. her fear over rode all her knowledge. She never had any MND and is healthy still today.

I also never had health anxiety before this. I have worked with horrendous dangerous reagents, and infectious pathogens and carcinogens. I shared a bench with cholera toxin, cyanide, and formaldehyde, and mitogens able to activate every cell in your body, and dont get me started on the radioactivity........all that was nothing, but this BFS it is a hard slog.

Good answers in this topic and Johnny thanks for taking the time to write that lengthy post.

Hx
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Re: Why is it so Hard to Accept a BFS Diagnosis?

Postby elliottok on September 8th, 2014, 4:25 pm

Yeah but I wonder how many were actually ALS experts, not just neurologists. Lots of neurologists who deal with other neurological issues besides ALS. I think if you see it every day you'd be much less likely to fall victim to this type of hysteria, but maybe not. At least my doctor seems to be immune.
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Re: Why is it so Hard to Accept a BFS Diagnosis?

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