I am scared to death

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: I am scared to death

Postby kstoruk on October 10th, 2011, 1:32 pm

Dude, i'll bet you 100 bucks that you don't have als or MS, you can collect the money in 6 months just wait until then, don't do anything stupid, you're in a very low time right now, i've been there many times, unfortunately we focus on the wrong issues, BFS might be chronic but it's not progressive or disabling. Actually what we miss on this site is that we're not afraid of ALS, we are afraid of other things and it's best to identify those things with your physician, really, if death is what you're afraid you should talk to your doctor about it. I'm sure that in a world where all diseases would be cured we would be darn afraid of meteorites hitting the earth or stuff like this.
FACT: Stuff that looks abnormal to you right now will look absolutely normal in 6 months if you just quit looking at it for a while.
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 2:01 pm

Do you know why BFSappears to be much more rare than it really is...because the only ones that go to see a NEURO for twitches are the ones that have googled twitches and found ALS, have problems with anxiety so they do not see that there is a big difference between them and a person with ALS, freaked out, went to their doc who said they are OK, insisted in seeing a neuro, who told them they were OK, insisted in having a cEMG and this came off...clear with a diagnosis of BFS. No doc would even think about sticking a needle into someone who is just twitching a bit more than the average person....
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 2:27 pm

Thank you both.

I don't have only twitches I have night tremor. I've HAD night tremor 3 weeks before first finger twitch at night. So tremor in hands and finger twitch were FIRST and my ALS googling came AFTER that. So there is no way the night tremor and finger twitch are normal or self induced. I could self induce many things (I know that from the colon/stomach/eye problems I had in my past), but how can I explain this fact to me and this is a fact really, not my mind:

I had 3 weeks of night tremor before.
I had index finger twitching all night BEFORE.

Then same day I looked at what finger twitch so I agree all the other twitching can be from crazy mind ;-) But the first one was not and it wasn't a single twitch, I twitched for a night. And the tremor stuff I had for 3 weeks and I WASN'T having any bad ideas, I thought like normal people: why is that, it bothers my sleep. I truly didn't know MS or ALS then, so something went wrong in me before.

PS - I knew the name MS but I didn't ever look what this was and what were the symptoms.

That is my reasoning why this is not only mind playing tricks. 3 weeks of every night tremors were before I even knew this could be dangerous. Didn't go to doctor, I was fine during the day and I was not having a health anxiety attack. It is hard to believe but I am not triggered by something that happens ONCE to me, there has to be a trigger after some time. Yes, the trigger was finger twitch and me looking what it was. That started the panic anxiety problem. But I didn't have a single twitch and went into panic or one night a little hand wierdness and I went into "panic mode". It was really not like that.

That is my reasoning that the finger twitching all night and 4 weeks of hand tremor can not be "there is nothing physically wrong with you". Unfortunately I didn't find any "easy" clue as what it might be, I just found a couple of disabling ilneses.

I hope I cleared myself up what about the before and after :mrgreen: thing. I am not into panic mode for every hair lost ;-)
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 2:38 pm

Maybe the doctors here in europe are not so familiar with BFS. I had 6 neuros in hospital, that did not know BFS. I had one guy there (the EMG spezialist)telling that there isa RARE disease called BFS. I have a new neuro here that said right away....oh, that's BFS, I'm sorry you have this, it's annoying, I have quite some patients with that, it is not rare....so only one out of 7 neuros here knew something about BFS.....I know that the form of BFS we have is very hard to deal with, especially the pain and the tremors can make you freak out, But one must not forget that BFS also covers people that are just twitching. So I guess the BFS community is really huuuuuuuuuuuuge. The german internet pages are full of people scared to death by twitching, because they onla find"ALS" when they type in "twitch". Really, they freak out there and unfortunately there's no german speaking community of twitchers....And I NEVER heard a german doctor on these websites mention the word BFS! They only said that the twitches are benign and that they don't know about the tremrs and the pain and that they should get their mg-levels checked...
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Re: I am scared to death

Postby trajon_34 on October 10th, 2011, 4:55 pm

What is the significance of a "night tremor" anyway? Am I missing something here, because it doesn't even show up in Google for me. Also, if you nerves are hyperactive it can cause all kinds of symptoms. But this doesn't mean they are dying. Do you have some schooling in neurology or is this just the School of Google and Self Interpretation?

Correction: Unless you are talking about night tremors - ie earthquakes in the night or night tremors - ie sleep disorders.
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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 2:46 am

I am talking about night tremors - the hands shaking when I fall asleep and wake up from them.

I do not have any degree in neuroscience and I don't know what this means. I googled this yes but I can not find ANYTHING. I could find the symptom about night severe shaking, the kind that wakes up your partner etc. My symptom seem to be non existing and that scares me even more. This was the first symptom 4 weeks ago and is more and more persistent. Today it woke me up at least 10 times. And when I am fully awake it dpesn't happen. The more I am awake the more it doesn't happen. I have some funny feelings in my hands when I am awake, I have some small twitches at night now but the tremor of the hands is the most bothering. And when I fell it I am thinking this are my hand muscles dying in the last struggle :-( It is terible, I am afraid to fall asleep.

And you are correct, there is no clue on Google. 3 general practitioners don't have a clue. I was unable to talk to neuro till now...
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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 2:49 am

And I think this was in left hand first where I have pain, now tremor is in both hands. That means progressive to me :-( I don't think that is connected to the hands pain at all.

From what you all tell me, the only my irationale response seems to be concluding that hand shaking at sleep/after sleep is a 100% sign that my muscles are dying. And on top of that I get fascs and that is for me another sign of that.
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Re: I am scared to death

Postby chrissi on October 11th, 2011, 4:38 am

The dying of muscles in ALS cannot be influenced by one's state of consciousness.....
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 4:47 am

No the twitches are allways also at day or night, it is the tremor that is just at night so bad. When I am in a a sleep part of state consciousness.

I hope to be once on the side of comforting other people who come to this place teryfied of some nerve ilness (I even dont care the name any more, but it has to be deadly in my mind that can shake your limbs or twitch your muscles and you don't want this to happen).

I mean, I've had bladder, stomach, colon and few other problems in my life. I have felt very bad but I've never felt so lost. In colon problems I've some hope because colon problems are known to have relation to brain-gut connection so to speak.

I have never seen anybody who has psychological induced trembling without a nerve disease. And before you say, I have the twitching and funny buzz like most of you, but the night terror, I mean night tremor I have not find anywhere, like it doesn't exist. I fear it becomes day tremor soon :-(
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Re: I am scared to death

Postby mommylondon on October 11th, 2011, 9:35 am

Hi Jerry...could you please explain to me what you mean by night tremor....I'm asking because I used to have some pretty strange issues when I would go to sleep at night when my BFS was real bad....so I'm just trying to understand what you are saying when you say "night tremor"
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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 10:00 am

By night tremor I mean when I go to sleep I am "OK" (considering other things), but when I sleep I wake up with tremor in my left hand or both hands. I do not know if the tremor can be seen, but it is felt if I press right hand (when it is unaffected) to the left hand I can fell it has tremor. I am half sleepy then so it is hard to describe. The hand is like it is vibrating at some 3 shakes per second. I guess it is felt like tremor you see in old people when they take a cup of coffee, hands are shaking. Sometimes only hands sometimes also arms I think, if both hands are involved it is hard to test with your hand if arm is also affected or not.

Slight trembling, shaking hand would best describe it I guess. There is no pain involved, it is not like my hand is going 10cm left or right ;-) It feels like shivering if you are could but only in hands and I am not cold.

As soon as I wake up completely it shops for some 10 seconds and starts again and stops and starts. When I am completely awake it stops and up to now (I will not praise it!) it didn't come at the day (twitching yes, wierd sensation in hands yes). It is so hard to wake me up I guess or I wake up anyway as we all do many times a night especially after 4 AM when the sleep is not so tight.

I am not 100% but it is like if this tremor comes with sleep consciousness. I wonder if I fell asleep one afternoon for an hour, will I get same thing or not. I laid down in bed from 4-5 AM today and it was on and off, when I was in awaiken terror it was gone and of couse I couldn't sleep any more. But then some hour later I fell to sleep again and my hand was trembling again. I lied in bed for test after I was fully awake at 8 AM for it to come back, but didn't. I switched the light to see if I can see the tremor or just feel it with my hand, but it was gone.

My hands fell fatigued in the morning, I guess because of this tremor. Hope they are working at least, not dying off. The point that nobody have seen anything like it makes me even more scared, I guess that should make me more reassured, I don't know. Maybe that will be called Jerry's symptom one day ;-)
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Re: I am scared to death

Postby mommylondon on October 11th, 2011, 11:32 am

Honestly Jerry, I really think all that is....is left over adrenaline from when you are awake and full of anxiety and adrenaline, and when you go to sleep that stuff has to come out some where....adrenaline levels take a long time to regulate when someone is filled with anxiety on a chronic level....and even when we sleep, we still have adrenaline coursing through our system and it can make for some pretty strange symptoms in our sleep...People with BFS can have all kinds of tremors....I can remember waking up shortly after falling asleep and my hands would be shaking, sometimes my arms as well....it is very annoying and a bit distressful when we are trying to rest and our body cant for one reason or another....I do not think you should be looking at this symptom as some kind of sign that you have a neuro nasty....sounds stress and bfs related to me.


Take care

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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 12:05 pm

Thanx. I would say that also but... (there is allways a but, is there), my trembling at night started 4 weeks ago when I was not stressed to some dangerous levels. So the stress was not what was coming out of the tremble I think. That is for the first 3 weeeks when I was not even scared.
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Re: I am scared to death

Postby mommylondon on October 11th, 2011, 3:54 pm

Well that still makes sense to me Jerry because like I said...all kinds of tremors and trembling comes with BFS..I remember my legs shaking horribly weeks before all this other stuff kicked in...it went from my legs to my arms, to even my head that was shaking....it was horrible....then my anxiety kicked in and all I could ask was "what the hell is all of this, am I dying" A year and a half latter Jerry and I'm still here....not nearly as shaky and the tremors are almost a non issue (almost)....was it anxiety?? Was it BFS?? Does it matter??? Nope, all you need to do rite now is just concentrate on getting that anxiety under control and I promise you, many of your symptoms will fade away....or become just background noise....You are one of us Jerry, dont let your anxiety tell you different.
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Re: I am scared to death

Postby jerry2 on October 11th, 2011, 4:14 pm

Thanx mommylondon. I hope you are right. Something is there for sure, some problem in my hands. Tendons in palm seem swollen or bigger than they should. And the finger pain is there when I grab and press with index or middle finger and the pain seems to radiate down the hand. It is worse today that whole week. I guess something is wrong with my hand, it is 5 months like this, never good. Even my muscle can atrophy a little because I rather not use the hand for gripping and touching and 5 months is some time.

But what anxiety can do to us... human is a really a machine doctors don't know when it comes to nervs... It would make sense, your words somehow. I was not so stressed, but I did have in september some changes in my life I didn't like (nothing major but in my head it was big....). It could make sense I guess that when I relax (and sleep state is relaxing, should be) something comes out all the worry etc. I have vivid dreams and nightmares for few years not every day but most of the days. To vivid, to real and scary always, not one dream, but every possible scenario, possible of impossible, but 90% of bad dreams and vivid dreams and me exhausted in the morning like I was fighting monsters all night. I guess I can not say I didn't have any problems before I started shaking at night and twitching at day and night.

I still fear the neuro ilnesses, they seem the worst, not only neuro ones like MS, ALS, but also schichofrenia, dementia, manic depression. But from all the wierd things happening to me this 7 years it would be fair to say that no, I can not 100% positively say that the shaking can not be my stress coming out at night like with vivid bad dreams before that. We really don't know what is in out heads, do we.

Then again, it is illogical I tremble in the halfsleep consciousness, isn't it? It doesn't make sense as you told me also.

Well, off I go to bed one more night... Hope nothing new develops. I wish one night free of trembles it would really make me fear less see that it is not permanent and progressive.

See you all...
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Re: I am scared to death

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