Hope it's BFS - Tongue twitching at times too - 9 months

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Hope it's BFS - Tongue twitching at times too - 9 months

Postby Pascal35 on July 30th, 2014, 5:22 am

Hi Guys,

I'm also suffering. I'm 36 years old.
I have to state that in in general I'm prone to be hypochondriac with different illnesses over the last years.
My latest story started 9 months ago.
Twitches mainly everywhere, randomly but it will happen a few times every day in quite a few muscles.
I had also tongue twitches that came, gone and now came again in a different spot.
Reading the internet I got ALS fear and panic.
I have visited numerous neurologists, professors and highly qualified. Everyone reassured me that I don't have ALS.
In addition only a few actually managed to view the twitches during the checks.
My concern was that I had brisk tendon reflexes in both knees. Both the same without clonus. I think this is maybe something I always had.
I also believe that I must have the world record on the amount of EMGs (including tongue) over this period of time.
Every doctor cleared me. There were a few fascics in some EMGs but on the follow up here was nothing.
In the tongue everything was always clear. The last one yesterday.
I think I have done more than 20 EMGs in total!!!!!!
Gladly until now there is no weakness and no sign of atrophy etc... I'm measuring the muscles regularly.
I have been given anti depressants but the more I google articles etc the more my panic continues.
The main problem is that every time I feel a twitch (especially in the tongue) I star to panic again and want to visit the doctors. I always thought that 9 months is a pretty good reassuring period not to have ALS but now I am reading articles which suggest that a safe period is 2 or even 3 years!!!
On the other side I'm not sure if the condition of BFS is at some point leading to ALS or at least we are having more percentage to get it.

So to end this long post I realize that even with the clear tongue EMG yesterday and several clear EMGs over a period of time I end up having the same panic, the same fear and pay attention to every small single movement in my body.
I'm also worried that I will lose friends, job opportunities and even wife if I don't find a quick solution with that issue.

Any advice will be very much appreciated.

Pascal
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby leroyb on July 30th, 2014, 8:33 am

20 emgs qualifies as a site record smashing the previous record of 9 :)

STOP GOOGLING. You are fine and trust me you will alienate everyone you know if you continue to obsess over this.
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby Pascal35 on July 30th, 2014, 9:33 am

Thanks leroyb for your response. You are right.
My real concern is the tingling-twitching that I feel in the tongue.
Additionally I had a hope that 9 months is quite reassuring period...
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby leaflea on July 30th, 2014, 6:38 pm

9 months should be enough! Have you read this site at all? Have you read it as much as you are googling everything else? You must be a glutton for punishment to continue with these searches. Honestly, some people like to be scared and that is why haunted houses are so popular (but not depressing like this particular habit of yours). If you feel the need to compulsively check the internet for anything, simply use the SEARCH function above. Even if nine months wasn't enough, your EMGs would show SOMETHING. Your exam would show SOMETHING. Another habit to break besides ending the googling...STOP the going back to the neuro or any doctor for reassurance. Get HELP for the anxiety. The rushing of to a Dr. for every new thing that bfs does and will bring, as it is a constantly changing and moving phenomenon, is pathological and will make you worse. If you were to graph the intervals between running back to the doctor and the amount of relief you feel for each time you would see that the times between visits is shortening and the degree of relief diminishing. You are TRULY making yourself worse with that behavior. This cannot be emphasized strongly enough. I don't mean to judge (I have been the same) and have nothing to gain by telling you this except it is what I have learned. It is one thing that has helped the most - to go to the doctor only for normal things like annual exams or strep throat check with a fever, sore throat, and known exposure to strep. Just stop. If you can't stop, Get Help. You are fine.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby Pascal35 on July 31st, 2014, 3:12 am

Thanks leaflea
Yes. I am reading this site over the last 9 months. I'm really happy it exists even though there are some controversial stories about the fact that some good be reassured over the period of 8 or 9 months.
At any case thanks for taking the time to respond. I already started therapy with Prozac so I think I should wait a few weeks to see results.

Regards
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby leaflea on July 31st, 2014, 11:39 am

Pascal, In the months you have been on this site, you know that 9 months is fine in 99.999% of the time when you have had EMG and clean neuro. You have less chance of developing ALS than the general population who has not visited a neuro. It is the odd or rare cases that get written about for all the world to see. I understand - there is conflicting information out there. But the vast majority of top experts agree 9 months is more than long enough. Reassurance seeking is an addiction, it is compulsive and detrimental like any other addiction. Find someone, a Cognitive Behavioral Therapist, to keep you accountable to not go to the doctor. This was my therapists idea and I have complied. It has helped. He also advised me to stay off google for anything and I have not complied 100% and I must admit, it is these things that make me worse. He is right. Find someone experienced with hypochondria and get it under control. Our only option is to learn to live with the possibility of the unknown and be okay with the idea, yes, maybe we will get it - highly unlikely but of course anything is possible. We also may get hit by a bus or lightening. Do some PRODUCTIVE reading like "A New Earth" or "The Power of Now." This helps. You are not the exception. You have plain old odd and mysterious bfs just like the rest of us. Acceptance of this condition is your goal.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

Postby Pascal35 on September 6th, 2014, 5:28 am

leaflea wrote:Pascal, In the months you have been on this site, you know that 9 months is fine in 99.999% of the time when you have had EMG and clean neuro. You have less chance of developing ALS than the general population who has not visited a neuro. It is the odd or rare cases that get written about for all the world to see. I understand - there is conflicting information out there. But the vast majority of top experts agree 9 months is more than long enough. Reassurance seeking is an addiction, it is compulsive and detrimental like any other addiction. Find someone, a Cognitive Behavioral Therapist, to keep you accountable to not go to the doctor. This was my therapists idea and I have complied. It has helped. He also advised me to stay off google for anything and I have not complied 100% and I must admit, it is these things that make me worse. He is right. Find someone experienced with hypochondria and get it under control. Our only option is to learn to live with the possibility of the unknown and be okay with the idea, yes, maybe we will get it - highly unlikely but of course anything is possible. We also may get hit by a bus or lightening. Do some PRODUCTIVE reading like "A New Earth" or "The Power of Now." This helps. You are not the exception. You have plain old odd and mysterious bfs just like the rest of us. Acceptance of this condition is your goal.



Thank you very much. I actually just saw your response and you are right to the point!
To be honest not visiting a doctor for 2 months during April and May was a good step at that time and i felt better.
At any case... almost 1,5 month after this post the tongue twitch has almost disappeared. It happens but very rarely.
Twitching in general is also less around the body. I do have some strange pain for a few weeks on my right leg (foot and calf) but in general i decided to move on...
Yesterday was the first day i stopped benzos after 4 months (i was getting 0.5mg Xanax a day) and i feel OK.
This 10 month adventure was very freaky so far... i was told that i was chasing a ghost but honestly i almost ruined my life and my family.
Tried so hard to cope with my business and daily activities. I always felt better when i visited a doctor for re assurance. That lasted for 1-2 days and then again the same. It was like a drug.
I was having EMGs and i was in alerted for every little sound i would listen to. I was doubting the doctors outcome... In a state of panic!!!
So much reading, so many hours of (hopefully) unnecessary learning about ALS and EMG's... so deep analysis about everything - Research news, people who are suffering, doctors opinions etc...

Anyway - as i said before i decided to move on and leave my fears behind. I hope i will manage to do it... I have achieved a lot harder things in my life so i am sure i will be able to deal with that too. I hope after 6-7 months i can be back reading my posts and feel totally different and "joke" about how my mind was lost...!

Thanks again for reading my monologue!
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Re: Hope it's BFS - Tongue twitching at times too - 9 months

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