So I had an idea to help people here...

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So I had an idea to help people here...

Postby Gamindsoc1509 on January 13th, 2014, 3:51 am

I sent an email off today and may send a few other to highly regarded neurologists asking if they would sit down for a short interview with me. I'd be happy to pay for the appointment as a regular patient.

Basically my idea is to ask them a bunch of questions proposed by this forum. I should add.. I DO NOT believe in sugar coating answers and will not accept off the cough answers. I think in the long term this actually causes more anxiety as people start to feel the information isn't realistic as it could be and it UNDERMINES they confidence in what they believe.

However, I pride myself on being something who is very empathetic and good at explaining things to people in a way they can understand. So the way I plan on handling the interview is asking the doctor to give comparisons that EVERYBODY can understand.

For example - "Yes you can have fasciculations as a first symptom which may possibly be ALS, however an equivalent example would be that the cold you picked up is in fact cancer."

Not off the cuff remarks but REAL comparisons by a Doctor who would critically say they are the same. I PERSONALLY find this style of presentation very easy to cope with. How often do we read a response from a professor we can hardly understand and don't have a chance to go back and confirm little details. I plan on doing all this in one interview.

What do you guys think? If so, maybe present a list of questions you think I should ask and possible counters to likely responses?

Thank you.
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Re: So I had an idea to help people here...

Postby Watereddown on January 13th, 2014, 4:15 am

This is a really good idea. Whenever I have a question that is really on my mind and getting me down, I never hesitate to shoot an email to one of the four neurologist's ive seen (I try to alternate between them so they don't think I'm crazy.) However, mainly the questions I ask them is related to MS and not ALS. For some reason every one of the neurologist dismissed the idea of ALS when i showed them a recording of a visible twitch on my thigh. They still did the clinical but all of them mainly said ALS does not present like that.
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Re: So I had an idea to help people here...

Postby J4son on January 13th, 2014, 5:15 am

This website should change its name from aboutBFS to about_ALS_phobia :) the same way arachnophobia’s people fear spiders. Most people here and I am at the top of them, do not discuss how to manage annoying symptoms like on a fibromyalgia or on a chronic pain or a rheumatism forum, but how to get rid of their extreme fear of getting ALS. In fact the difference between a hypochondriac forum that I used to visit and here is that on the hypochondriac forum people have an array of symptoms and fear a horde of different diseases from smallpox to Creutzfeld-Jacob, while here it’s mainly focused on one symptoms and the fear of one specific disease :)

Don’t get me wrong, this site is great and the guy who started it deserves to have his statue worshiped by the crowd :) Personally, it helped me a lot to lower my fear and see things in a more balanced way. Now I don’t think that having questions answered online by a neurologist will be more helpful than what we already have. After all, there are many reassuring scientific studies out there regarding fasciculation, and many people here will still suffer from extreme anxiety even after seeing 5 or 6 neuros and having 4 or 5 EMG. Continuously seeking reassurance is not the best way to overcoming anxiety.
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Re: So I had an idea to help people here...

Postby Gamindsoc1509 on January 13th, 2014, 6:08 am

I understand that and without offending anyone I need to say something. I personally feel most of the 'information' we have here is slightly sugar coated. Simple as that. The real facts can be scary (not to a rational mind but to the un-rational health anxiety person they are!) but if they are presented in a the right way using comparisons I think it will be very helpful.

For me personally as I said above. When I read an article written by one of our members and it makes me feel better but then I found information which strongly contradicts. It undermines the entire read and the person themselves.

Words that doctors use like "very unlikely," etc I think can be put together better so that they are still 100% true but also easier to cope with.

Also I planned on actually asking the neuro regarding this type of anxiety and his thoughts on controlling or dealing with it.

On a final note. Dealing with anxiety is a seperate long term battle that each person has to undertake on their own. The truth is that if you start dealing with your anxiety now, it will likely be awhile before your thinking is affected in a positive way. No need to suffer unnecessarily during that process.
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Re: So I had an idea to help people here...

Postby Yuliasir on January 13th, 2014, 7:06 am

I may partly agree with J4son (partly because we also discuss many ways to treat our symptoms and moreover, we here discuss many ways how to treat anxiety which is very important),
and would like to note that we have 'BFS in nutshell' which is in fact an email interview with neurologists collected by our site founder, and we have Email from prof. Carvahlo post in which the one of the best world specialists professor Carvahlo and Dr. Eissen, leading neurologist from Germany, answer the questions, I suppose, quite the same as fellow Gamindsoc is about to ask :)

So suppose he would not have any really crushing answers :)
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Re: So I had an idea to help people here...

Postby J4son on January 13th, 2014, 7:32 am

Gamindsoc,

I understand your point especially about the sugar coated information and the many contradictions you might find on the internet. This is why on a personal level I try to keep things simple and focus on the scientific data and publications available especially when it is made by professionals, and not on random stories or opinions found here and there.

I think we should all keep in mind that nothing will ever be sure 100%. You will always find exceptions in the medical field. 7.3 billion People lives on this planet so it’s normal to find odds, exceptions and other things that does not fit into the norm. I’ve read somewhere about a study saying that a cause of health anxiety was the fact of not being able to accept and handle uncertainty, and this is obvious on this forum where anything that seems to contradict the rule becomes the onset of a true panic.

When I read about info that contradicts the mainstream knowledge regarding twitching I try to always focus on the data and studies available:

- The Mayo clinic study, which says that a patient can be reassured after a clean clinical and electrical test. That doesn’t mean you will not find exceptions among the 7.3 billion humans on earth, but it means that in the overwhelming majority of cases a benign diagnosis can be given after only one EMG. And that study comes from one of the best medical center in the world.

- The study about the 6.7% twitchers developing ALS, means also that if you twitch without weakness your chances of having a benign condition are around 94% and that’s huge too.

- Another study out there has linked BFS to health anxiety and other emotional problems. So it’s not just accidental that most people here (not all) suffered from extreme stress, emotional problems or health related anxiety prior to the onset of twitching.

- A study from the Netherlands in the eighties showed that more than 50% of the general population twitches.

- An old Israeli study showed that only 3% of ALS cases start with twitches.

- A reputable ALS specialist Prof. Eisen said that in his opinion 8 months of twitching without weakness or clinical changes means no ALS.

- None here among the thousands of people on this forum whom were given a diagnosis of benign twitching developed ALS.

All these are scientific facts and studies, it does not mean it is always right, and it is absolutely normal to find cases that seem to contradict the norm, but whenever we read about odd, rare and scary stories on the internet it is important to get back to what scientific, doctors, neuros etc. have published in scientific papers.

ALS is also a rare disease. The yearly incidence of cancer (all sites) is 1/190, while for ALS it is 1/56000. Personally I know zillion of people with cancer (my father (cured), may grandfather, my grandmother, 3 of my friends, my martial arts coach, 2 of my coworkers, aunts, uncles etc.) I also know 2 persons with Multiple sclerosis, but none with ALS and I know no one who knows someone with ALS. For a male the odds of getting cancer during a lifetime are close to 50% or 1 in 2 men.

So submitting a list of questions to a neuro online, might be helpful but I don’t think it will have a big impact on the anxiety that everybody is experiencing here, and will not add much over what we already know, although I encourage anyone who would like to undertake such a job, and I will be the first one reading the report ;).
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Re: So I had an idea to help people here...

Postby emmie.s on January 13th, 2014, 9:56 am

[quote="J4son"]
- The study about the 6.7% twitchers developing ALS, means also that if you twitch without weakness your chances of having a benign condition are around 94% and that’s huge too.

I agree 100% with Jason and those are excellent points, however, I've never seen anything about 6.7% of twitchers getting ALS. Instead, I've read numerous times that 6-7% of ALS patients present with twitching as their first sign. Meaning, they likely had other symptoms such as reflex changes and slight weakness that they didn't notice at first, and it just so happens that the first thing they did notice was the twitching.
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Re: So I had an idea to help people here...

Postby chrissi on January 13th, 2014, 11:06 am

Yes Emmie, this is the correct interpretation of that number. That number is also retrospective, meaning this was the first "hard" sign they could remember. They did not have physical exams at twitching onset, which woud likely have shown reflex changes and weakness. They were not even afraid of the twitches and did the hundrets of self- test that BFSers do. And we are not even talking about EMGs.

There's one thing, that BFSers have to accept:
You won't get 100% , as simple as that. You have to learn to live with that, just like in every other part of your life. If you cannot accept to live with the 99 ,9% that your doc can give you, you do not need another doc for another test. You have to get a hold on your anxiety.
Unfortunately nothing in life is impossible, but some things are highly highly unlikely. The fact that we focus on the very small chance of having a deadly disease , shows a mental problem. And no study or doctor will fix this.

And yes- we need the bubble. We need the sugarcoat. Because most people on here are going though an extremely fragile mental phase. And because we have BFS, so there's no need to focus und highly unlikely things. As simple as that.
Your brain will not help you with this: it is a nasty little sucker that changes your perception in a way, that you are not able to see things clearly.
If you want to overcome the fear of ALS, you have to want to believe in the benign character of BFS. Because our brains unfortunately are not a big help for us right now.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: So I had an idea to help people here...

Postby MarioMangler on January 13th, 2014, 1:33 pm

This is a great idea, and i think it is wonderful to seek out neuros for all of the answers, but just from an oldtimer point of view I need to point out this has been done before on this board. Many, many times. In fact I would say somebody does this exact same thing around here every year. So while I think it is a great idea and it is great that you are offering to help people, I will tell you right know you aren't going to learn anything here that most people here don't already know. Nobody here has ALS, and nobody here has anything close to ALS. And that isn't sugarcoating anything. That is just me trying to help newcomers stop all this focusing on the wrong aspects of BFS.

There are many ways to deal with BFS and to learn to cope with it. In fact you have heard old timers argue about them all the time on this board. But the coping methods/treatment methods all start the exact same way. People just have to stop obsessing over this nonsense that they have a deadly illness that they clearly do not have. THAT is the key, and that is something that even the most bickery of the old timers will tell you. Get past the ALS nonsense, and -then- you can start realistically dealing with BFS.

I think it is great that you are going around asking neurologists, and I think it is going to help a lot of newcomers on this board in the end. But I will tell you the same thing that any old timer will tell you. If you are interested in dealing with BFS, you are really focusing on the wrong stuff. Nothing you learn from this project is really going to apply to you. Or to any of us.
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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: So I had an idea to help people here...

Postby veryworried123 on January 13th, 2014, 2:35 pm

Great points and advise senior members
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Re: So I had an idea to help people here...

Postby J4son on January 13th, 2014, 5:32 pm

Emmie and Chrissi,

Yes you are right about the 6.7% study, seems I have misinterpreted it. It’s 6.7% of people diagnosed with ALS whom had twitching as their first sign and not 6.7% of twitchers whom ends up developing ALS. Does anybody know the percentage of people in the general population that twitches above what is considered as normal? I’ve seen someone on this forum mentioning 2% of the general population. Is it based on a scientific study or survey? If true and based on what we know about the lifetime incidence of ALS and the 6.7% study, then the percentage of people who start twitching without weakness and ends up developing ALS becomes extremely low.


P.S: It also appears from the 6.7% study, that most people among the 6.7% had twitches and cramps not twitches alone.
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Re: So I had an idea to help people here...

Postby Rothhaar on January 13th, 2014, 6:20 pm

Hi Gamindsoc,

I also think, that your idea is really great. I have so many questions from reading too much on the internet and in scientific publications that I'm rather confused sometimes. Such an interview would definitely help a lot.

I'll try to write down some of my questions tomorrow (it's already past midnight in Germany).
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Re: So I had an idea to help people here...

Postby Rothhaar on January 14th, 2014, 12:33 pm

Hi Gamindsoc,

here are my questions as promised. Since I don't have much time this week, it's more a kind of a summary. If you need some references (to studies, paers etc.) I will provide them later:

1.) EMG, clinical exam and "waiting time": From reading here and in other places on the internet (scientific papers included) I got the impression that there are basically three different opinions: One opinion says that everything is already o.k. when you had a clean cinical exam.
Others say, that with a clean clinical exam only, you have to wait for 4, 6, 8 or even 12 months before you can be sure that you don't have **S, but with a clean clinical and a clean EMG you don't have to wait to be sure.
The third opinion (obviously derived from some case reports) says, that even with a clean clinical exam and clean EMG's you still have to wait for another 4-12 months before you can be sure not to have "it" (even Ghayes has reported somewhere that a specialist at a great MND center told him that they see two or three cases like that each year). So, who is right now?

2.) One or more EMG's: Here again we have contradictory opinions: most people on the forums say that an EMG in no matter what limb would show signs of MND if something were in course; hence EMG's of all limbs, trunk, tongue etc. would not be necessary.
Prof. Carvalho on the other hand has conducted a study in which he EMG'ed the right thigh of patients diagnosed with **S and in some of these thighs he saw only fasciculation potentials, but no signs for **S. This obviously contradicts the opinion that one EMG in no matter what limb or part of a limb is enough to rule out ''S. So, who is right here?

3.) Bubar/respiratory onset and EMG: I read in a presentation by an MND expert that in cases of respiratory onset (very rare: only about 5% of all onsets and mostly men over 60) **S doesn't show up in EMG's of the limbs and often doesn't even affect the limbs (so no weakness either). A case report I have read seems to confirm this and I got an impression that something similar might apply to bulbar onset. Is this right?

4.) Sensory issues: Again contradictory opinions here. In most statements, guidelines etc you read that sensory issues like numbness, tingling etc. are a good sign, because **S is usually not accompanied by sensory issues. Some guidelines I have found even use this as a means to rule out **S
On the other hand I have read a recent scientific paper whose authors found sensory issues in about 10-15 % of all **S patients they examined for the study (proven by NVC test). They suppose that there might be a specific subgroup of **S. with sensory issues Who is right in this case?

5.) Muscle pain, aches, soreness: Here again the question whether this really is only specific for BFS and hence may help to rule out **S. Plus the question (since I suffer a lot from those right now) what you can do against it ...

6.) Vibrating, buzzing, humming: What should we think about these symptoms? Is it just a special kind of twitching and could it help to rule out **S

7.) Location of the twitches: Some people here say, that twitches below the waist are nothing to worry about - which basically means that twitches above the waist(arms, trunk, chest etc.) are at least more worrisome than twitches below the waist. Other people, to the contrary, say that the location of the twitches doesn't matter at all and that none are more worrisome than the others. Who is right here?
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Re: So I had an idea to help people here...

Postby johnnythejet on January 14th, 2014, 12:53 pm

Wow dejavu times 100. Its a shame that all the answers to these questions (which have been answered so many times) aren't so readily accessible that newcomers actually think there is something else to learn.
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Re: So I had an idea to help people here...

Postby veryworried123 on January 14th, 2014, 11:52 pm

perhaps we should have a sub section here at the top on the home page that has 4-5 key postings and articles such as answers to those questions, bfs in a nutshell etc...

then we could just say "see answers above"
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