Diagnosed with BFS and twitching since September 2013

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Diagnosed with BFS and twitching since September 2013

Postby Andreas on July 10th, 2014, 5:34 am

Hi ,

My name is Andreas, I am a 33 years old guy from Austria. So my english is not the best, but i hope it is good enough to describe you my Story with now 10 months of beeing diagnosed with BFS.
I got diagnosed with BFS in October 2013 after my first EMG.

Here is my personal Story:

The first time of twitching I remember was in September last year. I stayed in bed and my left thigh started twichting for about 5 minutes or so. It has been gone away and then there was no twitching any more.
At the next few days the twitching started sporadic in my calves. It was not so frequent and could primary only be felt. I saw the twitches only by watching the right place of my calves by the right time.
I consult my first neuro in October last year and she says that the twitching could be a part of ALS or MS. The exam Shows nothing wrong except brisk muscletonus in my right ellbow. She gave me a letter of referral to my first EMG.
At home I started a research on Google for ALS and MS. After a short time of doing the Research I got very anxious about having ALS because the symptoms where so suitable.

In the next few days the twitching spread all over my Body. My fear got into heighs I never thought it could be possible before....
There was no possibility for me to sleep anymore. Any time I try to sleep, my body woke up by a great twitch and take a deep breath like it has been lost his capability to breath. Then I felt the adrenalin going through my veins. This happens the whole night at all the next days. This condition feed my fear more and more....
My body could not find any repose. A short time later I begann having trouble with my speech and swallowing.
My tongue was slow and weak. Anything I tried to eat or drink makes me vervous, because I could not swallow it like it was before.
I spent lots of time watching my Tongue in the mirrow for fibrillations. And if I saw one, I felt lost and got nervous more and more...
My Tongue starts getting indentations all over it.
At this time I was sure that I have definitly ALS, bulbar, I concluded my life for myself....

In October I had my first EMG. The doctor who made the EMG was a specialist of doing EMGs. He does it the whole day.
He examined my right thigh and my left tibia, because I said that in my legs where the most twitches.
He says that he could not find any abnormity in my muscles or nerves. I felt a bit better, but after I read the storys in the net of people who having clean EMGs and then still got ALS after months, my fear was allready there.

My local neuro try to reassure me that I have no signs of any neuro desease at all, I should try to belive her. That was easier said than done because of all the Storys in the net......
This was the first time she diagnosed me with BFS.

The next weeks where the hell on earth for me. I could not sleep, eat and I finally got extremly depressed.
My neuro says that there is only one way out from my fear. I should make a inhabitation in a psychiatric clinic.
Until this happens, she gave me Bromazepam, a benzodiazephin. This should make me stable enought until the inhabitation.

With the benzo, my life was changed near to normal for about 2 weeks, I got hope and vitality.
Than the affect has been gone away from one day to another. My condition was as bad as it was before. My neuro said that this is normal in some cases and can only be re-elevated by taking more of the med. But she does not recommend this to me beacause after 2 weeks I stay with the same Problem again. So my Body was addicted to the Bromazepam with no longer positive Impact....

I reduced the Bromazepam gradually until I can´t divide the pills anymore. So my neuro gave me Diazepam-drops to make the last step to a benzo-free condition. The reducing process needed many weeks of my life with really miserable contitions during the process.

That was the time where the daily validation tests of muscle strength starts. I made a daily workout which take me about one hour.
My strength was not constant but ok, never got weakness. My strength got slowly better over the weaks of the workout.
I was forced to do that workout daily by my brain to verify that my strength is ok.

In december I got finaly my investigation in the muscular ambulance of the greatest hospital in Vienna. This was about 5 Months until the first twitch. The made a blood-test, a clinical exam and an EMG. The blood-test shows an CK of 120 what is absolutly normal. The clinical exam shows nothing wrong including no brisk muscle Tonus on the right ellbow.
The EMG was extensive made at four part of my body. The left tibia, the right shoulder, my cheek and in my lumbar. The picked up 20 muscle-potentials in every of the four areas. That means that they have to stab my muscles 2 or 3 times to pick up enough potentials. The examination hurt a bit, but it was good tolerable. This extensive Investigation was called ALS-program.
Everything came out fine with absolutly no hint of nerv oder muscle degeneration. Diagnosis: BFS

With that result I got a little bit relaxed and my life got better. But my symptoms stayed. At the beginning of March this year I finally had my inhabitation in the psychiatric clinic until the end of April. This inhabitation was the right step for me. I learned to releaxe my body an soul and to dissociate from my symptoms. The Problems with my tongue and swollowing completely disappear.
My tongue is strong that it was like before. My daily workout has been stopped and reduced to a minimum.

At the end of my psichiatric inhabitation in April I had an recent investigation in the muscular ambulance. The neuro made an clinic exam and nothing was wrong. I asked her for a new EMG but she said there is no need for a new EMG beause the last one was completely clean. She said that if there is any problem with my muscles or nerves, she could definitly assure to me, that it is not any kind of MND.

From that to now, my symptoms changed a bit. My general twitching has become less but my calves and the sole of my feet twitching now for every second of the day. I got exercise intolerance which means that my twitching gets stronger after some exercise. My strength is getting slowly down but I think that is a reaction of doing less workouts. I got little shaking all over my body by doing some exercise. I feel weak but my strength is like it was before. I get easily cramps in my feet and my costal.

At my last Visitation of my local neuro (30 June), she said that cramps are common in BFS and emerge after some time you have bin in having BFS. The clinic exam was ok again. But she says that I do not have BCFS because the cramps occur not enough.
An increased cramp-affinity by BFS is quit normal at all.

So here is my summary of symptoms that I have or had:

- twitching all over my body (tiny ones which I can see but not feel, or great ones which I can also see)
- twitching like a mashine gun or slowly twitches
- the feeling of ripple in many muscles but I never seen some movement in the muscles which the syndrome occour
- pain in muscles after use or without use
- tremor in my Hands and my body (varies a bit, jumping fingers at the most time)
- fatigue
- cramps (not much)
- exersice intolerance
- strong twitching directly after muscle use (especially my eyes and jaw-muscle)
- the feeling of weakness without clinical weakness
- good and bad days of muscle condition
- the problems are mostly symmetric

What do you think about my Story? Sounds that like typical BFS for you?
Has anyone similar experience with BFS?

I try to ignore my symptoms, but it is very hard to do that if you feel it every second of the day.
Should I insist a new EMG?

That is what my local neuro said at my last visit:
- after 10 Months of twitching there have to be signs in the clinical exam
- she had never a case where People twitched for months without other signs if they had ALS
- she never had a case of ALS where people had twitching as an initial syptom
- one extensive EMG is absolutely enough to rule out ALS
- yes there are people which have an untypical regime of ALS but I am not the one of 100.000.000
- The most storys about ALS which can be read in the net are not that typical for an ALS regime

Do you agree with my neuro?

Thank you!

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Joined: July 4th, 2014, 11:53 am

Re: Diagnosed with BFS and twitching since September 2013

Postby Yuliasir on July 10th, 2014, 5:56 am

absolutely and 100 % agree with your doctor.

by the way nightmares you describe in your initial period of fears seem to be typical cases of prolonged physiological central apnea happen to anxious people due to decreased CO2 in the blood (due to breathing pattern). They are described here many times and some fellows had them confirmed on the sleep study. Hope you do not have them any more as they are extremely exhausting (however benign too).

you made a lot of work to acheve your current more stable state and I believe your experience would be really valuable and necessary here.
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Re: Diagnosed with BFS and twitching since September 2013

Postby Andreas on July 10th, 2014, 7:02 am

Thank you for your Statement Yulia!

The problem with my sleep has completely gone. I can sleep very well now. I is gone like it came with no known reason.

I have to take 3 sorts of pills today to make my condition stable. I got Pregabalin, Sertralin and Mirtazapin from my neuro. With these three pills I feel ok at the moment.

The Mirtazapin is only for sleep in low dose. The other ones are to take off my anxiety. But I know that they can also increase my twitching symptoms. My objective is to get off from the pills at the next time. But I will not precipitate that.

The main part for me was to get off from the Benzo. That was extrem difficult and now I am glad that I made it.
So I can take it as an emergency med without getting pending on it again.

I can say to anyone here that if they are getting a Benzo from there neuro, please take it not as a daily med!
You will get pending on it and the med will loose his Impact after some time.
But for a bad day, the Benzo is a good med to beat your anxiety.

My main Problems at the moment are the Tremor of my whole body, the twitches and the Feeling of weakness.
The symptoms affect always my whole body, not just a part of it. If I feel myself weak, the whole body is weak.
The same with the tremor and the twitches. It can vary from day to day and it can be more affect to one side of my body but still always generalized.

I try to live my life just normal but it is not so easy du to my daily changing state.
Planing my future is quit difficult.

But as I read here, many other people having the same problem...
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Joined: July 4th, 2014, 11:53 am

Re: Diagnosed with BFS and twitching since September 2013

Postby Yuliasir on July 10th, 2014, 8:04 am

Yep :) and when i was on SSRI, I also was twitching alot mnore than before them... but them gradually. after finishing the course, I had noticed that my twitches started to decrease and now I have only those which I address to extreme stress due to situation in my country (I am from Ukraine), but they are anyway less than it was on SSRI :)))

but they had helped me to get the control back.
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Re: Diagnosed with BFS and twitching since September 2013



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