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I am down at the moment since new symptoms going on

PostPosted: August 23rd, 2014, 1:58 pm
by Andreas
I am total down at the moment. I noticed strong twitching in my left knee for over one week now. That is the first time I have a constant hotspot over this long period. And my body-wide-shaking is getting more worse day by day. I really tried to keep down but this is pure food for my anxiety. I can´t (won´t) beliefe that BFS is that strong.

So my ***-fear comes up again due to my new symptoms. I were at a point which I could deal with my bodywide twitching and trembling. But now I am not sure anymore.....

Does anyone notice also bodywide shaking which is tiny but can be felt over all.
The twitching is not the true Problem because I know that here are many persons which have also hotspots but the shaking all over the body makes me think more to ***.

Thank you for any response.


Re: I am down at the moment since new symptoms going on

PostPosted: August 23rd, 2014, 2:41 pm
by misterjuanperalta

BFS can have hot spots without a specific duration for each. I'm dealing with my recent symptoms (listed in below link) by checking strength and allowing time to pass (as hard as that is). For example, walking 3 miles per day, walking on tip-toes and heals, doing hand exercises, and lifting full one gallon water bottles. I've tried to calm my anxiety with logic, complimentary medicine (Passion Flower 500 mg) and by talking to people. I've done meditation and prayer (though of little faith). One thing I refuse to do (though I get tempted) is spend money as if it grew on trees to find out what's wrong. I've kept medical bills reasonable. I hope you feel better.

Symptoms: viewtopic.php?f=5&t=20796#p156457


Re: I am down at the moment since new symptoms going on

PostPosted: August 23rd, 2014, 2:49 pm
by leaflea
Andreas. I think it is still bfs. I have SO many more things than twitching such as shaking and vibrating. I agree. It is disturbing. However, I don't think the shaking and everything else is something ALS victims complain about or even notice the twitching. What we have is a hyperactive nervous system and that actually would explain everything wouldn't it? It is called neuromuscular hyperactivity. Problem is we don't have a good explanation of what that is or a definition which makes it harder to accept.

Re: I am down at the moment since new symptoms going on

PostPosted: August 23rd, 2014, 3:14 pm
by jebmd
Hello Andreas,
You have just described my symptoms to a T! I noticed the body wide shaking and vibration some time ago but put it down to my anxiety. This morning, I saw my left calf muscle twitching-never seen before but often "felt"-this sent my anxiety over the top!! I have had left leg pain on and off for many months but had days where I felt nothing-then the pain and twitching this morning. I have twitches elsewhere as well but I really notice the calf. I have just come in from doing one hour of gardening-lots of kneeling and getting up, sweeping obvious muscle weakness-therefore, NO ALS or so I tell myself. I have had 2 EMGs one in Dec 2013 and one in March 2014, both clear but I am going to request one more (which with the wait times in Canada will be Dec or Jan unless I pull my doctor strings), just to do the "follow up" so often suggested by others on this board that their neurologist requests. I suspect that if you have already been tested clear, you are experiencing more of the same with the infinite variety that we see on this board-so keep calm and soldier on-do something that will benefit both your physical and mental health-go for a walk, read a book that you keep meaning to read (I am actually doing both of these) and never get around to, ride your bike, stay hydrated and eat well.
Courage, this too shall pass!

Re: I am down at the moment since new symptoms going on

PostPosted: August 23rd, 2014, 6:04 pm
by Andreas
Thank you all! That helped me to came down.

Yes I have been testet with a extensive EMG on december last year in a muscle-ambulance and that was my last EMG (3 EMGs total, 4 months twitching). The test took a long time and everything came up totaly clean. The neuro who tested me said that he don´t know what is going on in my body but he can 100% say that it can´t be ALS. He said it is BFS or another unknown benigne constitution (that lines also to BFS).

And due to my complete clean EMG he said that there is no need for another EMG again. He said that a follow-up EMG is only important when something came up not 100% clean. And that a good clinical exam is more important than the EMG itself. And after 4 months, 3 clean EMG and even more clean clinical exams, there is no way that he overlooked something sinister. I think I should trust him because he is an expert in muscle-diseases.

Since then I only went to my local neuro every 2 months. She only makes a clinical exam on each visit and all of them are ok except my brisk reflexes. She says that the brisk Reflexes are typical for BFS and I should not worry about it. She also thinks that a new EMG offers nothing for me and after a short time I need a new one to keep my mind in peace. I think she is right with that. I told her about my new symptoms and that they are getting stronger and she said that BFS can progress for month or years until the point where it stays or getting better.

But the amount of changing symptoms makes me often think negative. The badest Point is when a new symptom came up ore when existing symptoms getting stronger. And the shaking and trembling feels so bad that it is nearly impossible to stay cool.
Then I am often at the Point to make my strength-tests and check out that there is no weakness at all. I also measure my muscle dimensions and they are evertime the same.....

here is my list of symptoms since the twitching started:

- twitching all over my Body (not really more since the beginning)
- muscle aches (more after workout, stronger in the last time)
- the feeling of buzzing, trembling, burning sensations and so on
- tremors (more in the last time, most in my fingers)
- excercise intollerance (symptoms getting worse after some training)
- the feeling of shaking in the whole body (more in the last time, strongest on wake-up)
- swollowing, speaking and breathing problems (completely gone 4 months after onset)
- sleeping problems (the feeling of beeing unable to breath prevented me from sleep, stopped 4 months after onset)
- sometimes I feel extremely weak (more in the last time)

That is all I can think of at the moment.


Re: I am down at the moment since new symptoms going on

PostPosted: August 24th, 2014, 10:39 am
by Andreas
Hi everyone!

Yesterday I took a Benzodiazephin for sleep because I was complete down and full of new anxiety as I wrote.
That was the first time after 3 months without Benzos. I considered for a Long time but finally I took one.
After a few minutes I felt asleep.

Today I woke up completely feeling good and not tired. Then I noticed that my shaking, trembling and twitching is 90% less than yesterday! And my strength is as good as it was not for a Long time.

That is the first time that my constitution changed over night from complete bad to nearly fine.
I cant say why this happened but I am pretty happy and decide to take the Benzo for a few more days and see how my constitution develops. Possibly my nerve-system need some out-time and the Benzo can do that for me a bit.
I know that Benzos makes the Body addicted to them but I won´t take them longer than a week.
I even don´t know that the Benzo is responsible for my good day but I Keep them a try.

I write this to show all of you how strong BFS can be and how fast symptoms can come and go.
I hope this gives some of you with similar symptoms hope and peace of mind.


Re: I am down at the moment since new symptoms going on

PostPosted: August 27th, 2014, 7:49 pm
by Nytviolet
Hello Andreas,
Since you've responded so well to a benzo, have you considered that you may have a rapid pulse or high blood pressure? Just a thought. There is absolutely nothing wrong with taking benzos in moderation, especially if it helps an existing condition and provides a solid nights' sleep. Just be sure to take the minimum necessary and avoid any other CNS depressant such as alcohol. I'm so very glad you've found something that helps; I'd be lost without my Ativan. Be well!

Re: I am down at the moment since new symptoms going on

PostPosted: August 27th, 2014, 7:53 pm
by Nytviolet
Hello Andreas!
Since you've responded favorably to a benzo, have you ever been told you have high blood pressure? Just checking. There is absolutely nothing wrong with taking benzos in moderation for an underlying issue, and I keep Ativan handy for anxiety. Just be certain not to combine with other CNS depressants such as alcohol and only take the minimum dosage needed. I'm delighted that you've found something that works for your symptoms. Best Wishes!

Re: I am down at the moment since new symptoms going on

PostPosted: August 28th, 2014, 5:35 am
by Andreas

I have no Problems with my blood pressure or pulse while I am on a benzo. But I only take Bromazepam now. That is the only Benzo with makes my symptoms better and don´t make me sleepy and my brain weak.

I also tried Diazepam and Oxazepam but these are not so my favorites due to they don´t work as well as the Bromazepam.

But everyone should try more than one Benzo to find one that is working well. There are many differences between them and they work different to everyone. But try to reduce the Benzo to a minimum to avoid addiction to them.

I was in addiction to them and the way to get off the Benzo addiction is one of the hardest thing in my life!
So I know what I'am talking about. Use them on bad days If you find one that is working for you but try to now overuse it!


Re: I am down at the moment since new symptoms going on

PostPosted: August 29th, 2014, 11:02 pm
by Nytviolet
Sorry for the double post above (sent by iPhone). Yes, you must often experiment to find the right benzo. Regarding symptoms, my left hamstring (and into my calf) feels a constant low vibration like a tuning fork is against it. They'll probably never be able to dx or fix it, so I stretch my legs out twice daily (minimizes this symptom), and just try to ignore it. Btw, you've already had clean EMG's so that is reason to celebrate. Hope u find the right med for regular use or PRN.