Info i read and got panicked

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Info i read and got panicked

Postby Pascal35 on December 25th, 2014, 4:42 am

Hi All and Merry Christmas,

This morning i decided to read some stories in the ALSFORUM.
I found a person who briefly described that he felt twitches in his right arm and then spread around his body two years ago. No weakness, he was running and making strong weight lifting exercises.
He went first time to the doctor 18 months after his first twitching because this twitching continued. So the doctor ordered an EMG and found fibs and PSWs and clinically they found only slightly weaker his left arm than the right...
Well i know that the information this person provided were really minimum since he went to the doctor only 18 months after his twitching BUT wouldn't he go earlier if he had other issues too...? I asked him a few questions so i am waiting for his response. I am not trying to scare anyone in here but i am just trying to share my panic after reading these posts.
13 months after this thing started to me, after all the Dr's reassurances i still panic. I still check my tongue for twitches and panic if it gets tired when chewing hard meat... i always check my speech to see if i can pronounce everything normally... i always check and do strength tests in my feet, arms etc... I even try to perform reflexes tests alone.
How long really this can continue? For how long am i going to check and check and measure my muscles checking for atrophy and panic if a muscles performs a twitch or two...?
I am 36 years old. Is this fear going to stay around for all my life?
We are reading posts here from 10 or 15 year veterans and we judge those posts on a positive way because those people are still healthy (gladly) BUT behind this you can realize that these people after 15 years they are still having the same scary thoughts ---
Apologies for this kind of message on a Christmas day but i had some free time to think this morning... (maybe thats not good)
Waiting to hear your thoughts about the issues i pointed out and exchange some opinions which may be helpful for a lot of people...

Regards

Pascal
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Re: Info i read and got panicked

Postby Yuliasir on December 25th, 2014, 5:57 am

Oh Pascal, you are your own BAD SANTA :)

wonder what kind of discussion you would like to see :)
The guy has widespread twitching (very common as you may know). Asked the doctor if he is OK - like we do. Was taken to EMG - as we do. Got signs of ALS on the very first EMG and weakness on clinical exam (on the other side of the body by the way compared to the source of twitching) - UNLIKE WE DO.
So, for everybody who got at least one clean EMG and clinical withing one year after twitching (not saying about having them over 20 in each and every body region) the roads are definitely make a yoke here.

ok, you have no option other than wait another 6 month to get 18, and then go and check again, and then you may find another story, about a person who was twitching for 4 years and then diagnosed... about the one who was twitching for 10 years and then diagnosed...

Pascal, I do not know if you are a POTENTIAL candidate for ALS development. There is not test for that yet.
But this is anyway a FUTURE. What is NOW, what I see IN PRESENT - is a person definitely suffering with severe anxiety and obsessive disorder. On my point of view (a point of view of a person with almost 40 years of living with GAD since childhood), it is much wiser to take care about this actual, chronic and life-spoiling condition. This will let you to develop then more practical attitude to the stories on ALS forum. We all have certain (same as in general population) chance for developing ALS. But some of us (especially, for example, born with hypermobility syndrome) have EXTREMELY HIGH chances for developng GAD or obsessive disorder. And for most fellows here it is not a chance but a reality. So I believe we must put all efforts not in getting any time frames, disussion statistics etc., but in facing anxiety as much as diabetic faces his or her diabetes.

In this way most of optimistic veterans got their optimism, believe me :)
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Re: Info i read and got panicked

Postby Pascal35 on December 25th, 2014, 8:23 am

Hi Yuliasir,

Helpful as always.
I have spent so much money getting in the best doctors in Greece and London. I was reassured by everyone but I'm still worried. You are 100% right it's now an obsess.
On the other hand I'm not sure anymore how to deal with it.
At the beginning it was 6 months mark. After 1 year. Now it's still not enough.
I wish I never googled at first place this illness.

You mentioned that all of us have the same possibilities to develop ALS like the rest of population.
Is this coming from any medical information or link?

I agree we must face anxiety. I had a health anxiety through out my whole life but there were normally tests that you would get to rule out the illnesses. In this particular one with what I'm reading around you can never be sure.
My simple question is DO TWITCHES HAVE TO DO ANYTHING WITH ALS DEVELOPMENT??? or ALS develops the Twitches? I believe the clear answer to that is solving the whole mystery and fear here
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Re: Info i read and got panicked

Postby Ghayes420 on December 25th, 2014, 9:52 am

Merry Christmas. The problem with sharing your panic is that unfortunately your post will spread panic. I know that isn't your intent. Just please be sensitive to others because you are not the only scared sensitive person on this forum.

You broke the golden rule of BFS. Don't spend any time on other forums. There is no point. You have a cognitive filter applied and everything you read will be focused for that one part in the article that you feel applies to you.

Obviously the case you bring up is nothing like what we have here. I too started with a right arm twitch that went bodywide. 18 months my clinical was clean and EMG normal. So see, we are different. We don't know the whole story here. In your description you mentioned that this person was strong and then they found a finding on his clinical of asymmetrical weakness. If he was lifting and exercising at this time he would have surely noticed the weakness himself if a neuro could pick it up on a clinical exam.

I am an example as I have been bodywide 24/7 now for 3 years and four months. I still lift weights plenty strong and go about three miles a day on the treadmill or road. I was told that I don't have ALS or MND just at the 3 year mark by one of the most respected ALS specialists in the USA. So, yes it can be benign.

I do suggest you get a reign on the health anxiety as yours does seem to be a tad higher than a majority of us here. Good luck and Merry Christmas.
A very proud fasciculator since 8/14/2011. :)
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Re: Info i read and got panicked

Postby Yuliasir on December 25th, 2014, 10:23 am

You mentioned that all of us have the same possibilities to develop ALS like the rest of population.
Is this coming from any medical information or link?


it comes from the good common sence and observation to be honest: even older members of this site (over 6o) reporting lifelonf or at least decades of twitchibng did not developed ALS. Also there was mentioned one 20+ follow-up study in which people with widespread twitching did not developed ALS with the aging, but I do not remember which exactly.

Those two of us who were diagnosed with ALS moved from twitching to other weird symptomes rather quickly (in weeks or months). Key issue is that no matter what was happening before - disease was not playing peekaboo for too long.

Look, for now ALS is incurable. No matter to look for early diagnosis. It is not a cancer in which a week might be a life or death difference. No prevention behaviour is known (maybe just refrain from heavy sports). So it looks like there is no point to live in too much fear - if this would be a call for you, you would not miss it. The problem is that you are always not sure - what if THIS is a call? That is where working with obsessive disease helps.

There is a reason why fearing is important for you. Look for it. Search for your own Dracula :) Becasue just for now your fearing system get the endless source of fuel (an ideal disease which coul dnot be checked easily and definitely and has many symptomes easily mimicked by other conditions) and would thrive on it. All secondary benefits your mind and body have from constant fear (and they exist, believe me) - all would soon become neglible becasue the heat of this fire is too strong.
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Re: Info i read and got panicked

Postby J4son on December 25th, 2014, 12:18 pm

Pascal35 wrote:You mentioned that all of us have the same possibilities to develop ALS like the rest of population.
Is this coming from any medical information or link?



Why are you interested if it is coming from a medical information or not since you don’t trust medical information? You said yourself that you’ve seen the best doctors in Greece and London but still you prefer to trust someone on internet who tells what he thinks happened to him. So for you this guy telling his own story has more to do with your own condition than the opinion of the legion of experts who examined you.

First how do you know his story is true? Second that guy according to what you’re saying saw a doctor 18 months later. Maybe if he had seen a doctor immediately, an EMG would have shown some bad issues, and clinical weakness would have appeared. He had a persistent twitch in his right arm that was not inspected by a doctor for 18 months. Do you have a non-stop persistent twitch above the knees that never stopped for 18 months? And if yes have you show it to your doctor? More than 5000 people here twitches from head to toes for many years, some for more than 10 years, and were diagnosed with BFS, none developed ALS. The 2 or 3 exceptions were all suspicious to their own doctors from the very beginning. Yet, you dismiss all this and go into a full panic because of someone telling a story from his own point of view, while admitting that he did not see a doctor for 18 months. Can you bet that guy would have had a clean EMG and a clean clinical done by a neurologist during the first year?

And then what the hell were you doing on an ALS forum, do you really think you can find reassurance there? You're not a newbie after all.
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Re: Info i read and got panicked

Postby Pascal35 on December 25th, 2014, 1:11 pm

Listen guys,

There is no reason to attack me.
We are on the same boat and we are sharing the same information that would ease our minds out of this scary disease.
If i get panic i need the people of the forum to ease my mind with valuable points and statements. Otherwise whats the forum here for?
I can understand that this person didn't provide the most reliable information about his condition. I also agree that we would never know if he had gone earlier to the doctor what the doctor would have said.
Thats why there is no reason for you to panic. I only asked for your opinion and i am happy to get it.
On the other hand if we want this forum to be really helpful we are obliged to provide any information (positive or negative) we get and discuss it.
Knowledge is the key to get us out of this situation...
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Re: Info i read and got panicked

Postby Yuliasir on December 25th, 2014, 1:16 pm

Thats why there is no reason for you to panic.


And for you too :)))
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Re: Info i read and got panicked

Postby Pascal35 on December 25th, 2014, 1:39 pm

Yuliasir wrote:
Thats why there is no reason for you to panic.


And for you too :)))


:-)

I have lost my mind with this situation long ago...
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Re: Info i read and got panicked

Postby Yuliasir on December 25th, 2014, 2:00 pm

Wish you get it back in the New Year!
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Re: Info i read and got panicked

Postby SecretAgentMan on December 25th, 2014, 2:17 pm

Pascal35 wrote:Listen guys,

There is no reason to attack me.
We are on the same boat and we are sharing the same information that would ease our minds out of this scary disease.
If i get panic i need the people of the forum to ease my mind with valuable points and statements. Otherwise whats the forum here for?
I can understand that this person didn't provide the most reliable information about his condition. I also agree that we would never know if he had gone earlier to the doctor what the doctor would have said.
Thats why there is no reason for you to panic. I only asked for your opinion and i am happy to get it.
On the other hand if we want this forum to be really helpful we are obliged to provide any information (positive or negative) we get and discuss it.
Knowledge is the key to get us out of this situation...


So this is just my 2 cents on the topic. From my perspective I don't really see people attacking you. I see it as maybe a little more like tough love. Going into an A** forum is viewed as a no-no here because the end result is pretty predictable. People work themselves up into a frenzy by projecting themselves into a situation described by somebody with a disease they fear dearly. It happens often and the community here likes to encourage people to not do this. The tough love is not to belittle you or kick you when you are down. It is to discourage that kind of behavior in the future. It is their way of showing their care for your well-being. You may see it as a negative reaction, but their motives are well-meaning.

On a side note I would like to add that I do not believe it is knowledge that will get anyone out of this situation. Knowledge is only part of a much bigger picture. Knowledge is power, but power can be dangerous if applied improperly. For example, in this case you acquired knowledge from an A** forum. That knowledge brought with it some power that you unknowingly gave to your fear. Your fear then used this power against you and caused panic. How do you not give your fear this power? It is tricky but possible. It requires a balancing of your own perspective. It requires some mental discipline on your part. You cannot simply will it. You must resolve some internal conflicts and resistance within your own mind in order to bring this balance into being. Sounds cryptic, I know, but through practiced creative visualization exercises or meditation you can accomplish this and what I say will make more sense.

Knowledge is a double edged sword. Much of its power can be determined on your perspective. The goodness or badness of any situation is determined by the observer and the perspective they adopt. An example that pops into mind is in the classic 1994 film Dumb and Dumber, Lloyd asks Mary what his chances are of her liking him. One out of a hundred? She says, "More like one out of a million..." He gets all excited and exclaims, "Yes! So you're telling me there's a chance. I read ya!" This scene is good for a laugh, but it also demonstrates the power of perspective. You can see one out of a million as the odds being impossibly against you, or you can view it from the positive perspective that it is not impossible at all, just unlikely. One perspective makes you unhappy, the other happy. Along with the power of knowledge comes the responsibility to use it wisely.

If other people on the forum are in a state of fragility due to their own fears and insecurities, is it really wise to advertise some frightening 'one in a million' chance anecdotal story you read on some A** forum? Probably not. Knowledge can make you educated, but wisdom is knowing what to do with that knowledge. Exercise caution with the power your knowledge gives you. Be consciously aware of how you use this power internally within your own being. Is there a storm raging at the center of your core or are you at peace? Don't feed the storm with more fearful knowledge until you learn how to use that knowledge wisely. Focus for now on that internal storm. Learn tools to calm it and master them. It will serve you well in life. Once you learn to do this there is no challenge that you cannot meet with calmness and confidence. How cool is that? It takes work but it is well worthy of the pursuit.

I'm always available for questions. Remember the above only reflects my own 2 cents for your consideration. Take care and good luck.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Info i read and got panicked

Postby Pascal35 on December 25th, 2014, 4:36 pm

Secretagent thanks for your nice message and for the time you spent to write it...
I agree. There is no self discipline left in me anymore with this issue.
The fear of having this terminal illness has really created many difficulties in my life and my family's life. I have so much education and i am an independent businessman but this fear has destroyed all my critical way of thinking... True and good example the question about Mary (either way i would have reacted the same way for her...:-) ) , every little thing that happens to my body immediately brings me in mind a story from the unnecessary "knowledge" i gained over that year and makes me panic again...
- Twitching (happens randomly in different parts of my body)
- Slurring FEAR (i am concentrated all the time to my voice and tongue to see if i am slurring,
- Tongue weakness FEAR (i am making tongue power tests every day to check - i am worried when i feel my tongue getting tires if i chew a fillet for some time and check with friends if this happens to them too...)
- Tongue twitch (i have a twitch which only comes on a specific spot once in a while and only when i irritate my tongue BUT that makes me look the tongue in the mirror the whole time)
- General weakness FEAR (i am checking everyday the strength of arms,legs etc.)

All those issues have made me visit so many neurologists. In my country it is an easy procedure.
So many neurologists and so many EMGs...
I have written reports (very recent) from very high reputable neurologists stating that there is nothing to worry about and i am not suffering from any neurological condition BUT the fear is still there...
Fear because i can't really understand why these twitches exist?
What brings that reaction to my body?
Are those twitches some kind of a pre-symptomatic period of ALS?
I read some of your previous posts and i will try to change my diet. Oxidative stress could also be a factor... Anyway. Thanks again and please add any information that would made us wiser! Regards
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Re: Info i read and got panicked

Postby Ghayes420 on December 25th, 2014, 6:40 pm

Hi Pasacal, I apologize if you felt attacked bud, that wasn't anyone's intent in our response. What Yuliasir and SecretAgentMan are saying are 100% correct. When you get a really good response like you do above from them, I suggest reading them a couple times to let them sink in.

We were all in your shoes at one time and we all stumble along the way, so don't be too hard on yourself. Keep your chin up.

The only thing I will add to the above is in response to you last questions. You most likely will never know why you twitch. Only 10% of cases are traced to some autoimmune disorder, the rest is totally unknown and pure speculation by even the best neurologists in the world. So try not to figure out the 'why' because that too will drive you crazy besides the constant twitching itself.
A very proud fasciculator since 8/14/2011. :)
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Re: Info i read and got panicked

Postby SecretAgentMan on December 25th, 2014, 11:02 pm

Pascal35 wrote:Secretagent thanks for your nice message and for the time you spent to write it...
I agree. There is no self discipline left in me anymore with this issue.
The fear of having this terminal illness has really created many difficulties in my life and my family's life. I have so much education and i am an independent businessman but this fear has destroyed all my critical way of thinking... True and good example the question about Mary (either way i would have reacted the same way for her...:-) ) , every little thing that happens to my body immediately brings me in mind a story from the unnecessary "knowledge" i gained over that year and makes me panic again...
- Twitching (happens randomly in different parts of my body)
- Slurring FEAR (i am concentrated all the time to my voice and tongue to see if i am slurring,
- Tongue weakness FEAR (i am making tongue power tests every day to check - i am worried when i feel my tongue getting tires if i chew a fillet for some time and check with friends if this happens to them too...)
- Tongue twitch (i have a twitch which only comes on a specific spot once in a while and only when i irritate my tongue BUT that makes me look the tongue in the mirror the whole time)
- General weakness FEAR (i am checking everyday the strength of arms,legs etc.)

All those issues have made me visit so many neurologists. In my country it is an easy procedure.
So many neurologists and so many EMGs...
I have written reports (very recent) from very high reputable neurologists stating that there is nothing to worry about and i am not suffering from any neurological condition BUT the fear is still there...
Fear because i can't really understand why these twitches exist?
What brings that reaction to my body?
Are those twitches some kind of a pre-symptomatic period of ALS?
I read some of your previous posts and i will try to change my diet. Oxidative stress could also be a factor... Anyway. Thanks again and please add any information that would made us wiser! Regards



No problem, and thanks to both you and Ghayes420 for the kind words. And regarding additional information for wisdom... I would say wisdom does not come from the information you have but more from the experience you have. I don't want to sound like a know it all either, because I learn the hard ways still to this day. The only real way to acquire wisdom I suppose is to take the experience you have so far, reflect on it, and apply it. There is nothing anyone can say to make anyone else wiser. They can only offer their perspective and it is up to each individual to evaluate that perspective and either use it to help themselves or reject it and move on. You have quite a bit of experience with this condition already. What has it taught you about yourself? If you spend time reflecting on your cycles of action and reaction you can adapt your tactics to utilize your strengths and more importantly improve on your weaknesses.

The fears that we have are really just emotional attachments to things that we do not want to lose. Most of the time they are conceptual illusions that are resultant of our perspective. All the fears you list above are attachments to your physical health, which is a difficult attachment to overcome. Why is this? Usually because of the surrounding uncertainty with the nature of life itself. This uncertainty is very much related to the ultimate fear, the fear of death and the possibility of non-existence. Do not most fears in some way tie back to that one ultimate fear? In this case the fear chain goes like this: BFS symptom => A** fear => death fear (life)

Am I correct? So how do you deal with the fear? Looking back on your experiences thus far you can reflect on them and find out what is not working. Going to A** forums should be on your list. Going to all those neurologists and getting all of those tests also does not seem to be working. It did not for me either. The reason for me was that they did not have the ability to give me the answers I was looking for. You can also look into methods and techniques that have worked for others in overcoming their fears over health and life. I found hypnosis regression to be very powerful in this area. I had read about people who had near death experiences (NDEs) and remembered a conscious experience upon revival were the people who had the least amount of fear of death. I actually have a close friend who had one of these experiences. The experiences he and others like him had were profound and incredibly powerful (and positive). I found hypnosis regression to be a safe and effective way to have a similar experience without actually going through the NDE event. I won't preach to anyone here, but I will just say that it was among the most powerful and positive experiences of my life and it did wonders for my own fears around health and life. That ultimate fear no longer grips me the same way it used to. So, to each their own, but if you are losing sleep at night you may want to look into it for yourself.

Hypnosis is a powerful tool in general. It is similar to meditation with creative visualization, but I think a little more powerful. Meditation with creative visualization requires you to slip into a slower brainwave state without falling asleep. This requires some practice and mental discipline. Hypnosis is easier because you have a guide to help keep you from slipping into sleep and they also keep you on course towards your goal(s) that you want to accomplish. There are many tools available to help change your thinking patterns and to help you to discipline your mind. These benefits will serve you well in life. I highly recommend taking the time and dedicating the energy towards working on them. If you don't change your tactics, you won't be able to break the cycle. If you're tired and you've had enough, do something different and break that cycle that is holding you back. You can do it.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Info i read and got panicked

Postby Pascal35 on December 26th, 2014, 3:12 am

Ghayes, i was not offended at all... i opened this thread expecting someone to tell me the obvious. To tell me that this guy's situation is an exception or that this guy only went to the doctor 18 months after all started. I didn't know it myself? Yes i did. But sometimes sharing it and expecting positive answers helps...
About the reason of twitching. OK. To post my question a bit differently. I don't mind the twitching itself. I don't even mind the reason that all started. What i do want to know and clear is that this twitching will not develop into a terminal illness. That i don't have to check everyday my strength, my ability to talk, my movements etc...
This is what makes me crazy.
I am suffering from health anxiety for many years.
I used to worry about HIV. I went, i had the blood tests and then all fine..move on.
Cancers, the same. Heart condition the same...
But this time is totally different. There is no such test that can give you definite answers. Over the last 13 months i had many many EMGs in all the regions.
At the beginning i was questioning the ability of the doctors who performed it. There were some popping sounds that i was worried that it was fibs but they claimed it was just a move of the muscle. So then i went to top professors to perform it. And went all fine... But then new regions in my body started to "suffer" - Tongue. New EMG all fine. But then i read that tongue EMGs are not really reliable and so on....
It's a mess and my attempt to find a clue instead of helping me, makes it unfortunately much worse.
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Re: Info i read and got panicked

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