Do l have ALS??? Scared to death! Please help!

Information about how to manage or reduce the severity of BFS symptoms

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Re: Do l have ALS??? Scared to death! Please help!

Postby Scandinavian girl on November 9th, 2012, 3:50 pm

Emil, you can PM me. I'm from Norway and share your experiences. with symtoms, doctors, fear... no doctor here have heard of BFS or a patient like me..
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Re: Do l have ALS??? Scared to death! Please help!

Postby twitchinjohnny on November 9th, 2012, 4:59 pm

My friend....

You don't have ALS. Everyone on this board has been on the same wild ride. You're amongst friends. Welcome to the club!

What you describe is classic BFS. Apparently, awareness of this condition hasn't really caught-on worldwide. I have an excellent neurologist here in the United States who has diagnosed me with BFS. It's a legitimate diagnosis....and.... it sounds like that's exactly what you have. Just like the rest of us.

Everything you describe about yourself points to BFS. Not ALS. Especially your age!!!!! You're just too damned young to fit the mold for ALS. If you're worried about the fact that your grandpa died from it, take comfort in knowing that only a small minority of ALS cases are considered "genetic" in nature. Most are considered "sporadic," having no geneological etiology or connections.

Everything you've said about your muscle twitches sounds exactly like what I've been through. Your twitches are not characteristic of ALS or any other motor neuron disease. Anxiety will, in fact, make things worse. The more cortisol and adrenaline (stress hormones) you introduce to your bloodstream, the more you'll twitch all over. The more you'll start finding "perceived" symptoms, too. It's like a vicious cycle.

You're O.K. The key is to not let your anxiety get the better of you. That's what keeps us all here on this board. Stay away from ALS boards. Those are for folks with ALS.... and you DON'T have ALS. Stay away from "Dr. Google" from now on. Dr. Google is what probably brought you and most of us here in the first place. Dr. Google is worth exactly what you paid him..... nothing!!!!

Good luck! Worry about living, my friend.... not about dying. Because you're alive and well and you're not going to die anytime soon.

:o) John
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Re: Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 10th, 2012, 10:41 am

Hi again!

Thanx to your all for your posts, they have truly made me feel better! REALLY!! insted of feeling down lve been more happier the last week due to the fact that you guys are so amazing!! respect to all of you! really!

My twitching has decreased a little more since the last week. They are not as frequent as they wore weeks ago, but l have noticed something new frightening, my hand specially my fingers tremble when lm using them, its vary from small to somethings bigger tremblings. l spoke with some friend in the phone yesterday and strarted to nootice that my left fingers witch l used to hold my phone to my ear started to trembling as if l had been lifting som heavy for hours. Does the trembling comes after an episode of BFS symtoms? Has anoyone of you guys have had the same symtoms or is it just me. The trembling isnt a bi product of my anxiety, l havent had death anxiety for almost a week now.

Do you guys been experiencing the same symtom? is it a symtom in the BFS?
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Re: Do l have ALS??? Scared to death! Please help!

Postby twitchinjohnny on November 10th, 2012, 12:04 pm

I have tremors in both hands. Tremors can certainly be part of the package with BFS. I noticed my hand tremors before month before developing muscle twitches. My tremors are known as "postural" tremors... or "essential tremors." The tremor in my hands doesn't occur when things are relaxed. Only when I have fingers deliberately spread. That little bit of muscle stress causes things to shake..... like your situation with the telephone held to your ear. I've been told by neurologist that this is harmless. Just like all the muscle twitching. Muscles in use... under tension and stress.... will shake and twitch.... including your tongue. So... save yourself a whole lot of time and angst, my friend by NOT looking at your tongue in the mirror. That'll do you know good.

Tremors, just like muscle twitches can be induced and exacerbated by anxiety. That's for sure! I know how stressed you must feel. Been there myself, for sure! Trust me.... you're O.K. Annoying and as scary as this condition is..... you're O.K. and you're going to feel much better when your anxiety dissipates.

Hope this helps!

John
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Re: Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 10th, 2012, 2:05 pm

Thanks alot Twitchingjohnny!, <

Its exactly the same symtoms as l have. As you said, my fingers on my both hands do only tremor during tenrsion and contraction, not in a realx mode. Does this kind of tremor occur within the spectra of ALS do you think? When do you notice your tremors, is it when you do simple thing as holding a fork etc? Do you think our kind of tremor occur in healthy people to?

How long have you had your BFS, when did it appear? what kind of "aftershocks" (Swedish expression) did or do you experience, now when your BFS debut is far away.

Yes omg this is the most traumatizing period during my whole entrie life. My anxiety is gone with 80% the only thing witch could bring my anexity down to 0 is the tests lm about to do soon l hope.

Kind regars
/ Emil
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Re: Do l have ALS??? Scared to death! Please help!

Postby twitchinjohnny on November 10th, 2012, 3:05 pm

Hi, Emil...

I spoken to more than one neurologist about my hand tremors. One of them is a real specialist in motor neuron disease. All of them have told me that the tremors are harmless.... NOT characteristic of ALS. These kinds of tremors are common with BFS.

Yes... I notice these tremors when performing simple, everyday tasks..... like holding a fork or a pen or the telephone. I can really notice it in my left hand just by turning my palm-up and gently spreading my fingers. My fingers will tremble like crazy! Caffeine and anxiety makes it worse! These tremors occur in healthy people, for sure! Aside from having BFS and all of its wonderfully annoying and scary symptoms, I'm a pretty healthy guy for my age (52). I work two jobs. Both are physically demanding. I like to exercise. I really have no physical limitations.

I first noticed muscle twitches in my calfs about five or six months ago. I, too, got very nervous about possible ALS, and then the twitches started to spread like wildfire! I started getting them in my butt, my thighs, my arm muscles, the arches of my feet.... even in my face. My left cheek and my upper lip sometimes wake me up in the morning because they're twitching so hard.

I've seen a really good neurologist and had a thorough exam and a couple of tests done. He's convinced it's BFS..... not ALS. This was a great relief! I still get a little nuts about it, however. Whenever I develop a new and different twitch, or some other kind of symptom. My twitching was preceded by about a year of strange paraesthesia, muscle cramps and roaming aches and pains with no swelling. Weird! I still get tingling and "shock" sensations in my feet and hands from time to time. At first I thought I had MS. I had a brain and spine MRI to rule this out. Very frustrating!

Keep in mind that the hallmark of ALS is profound clinical weakness! Weakness that usually sets in one limb or the other.... like one foot starts dragging constantly. Or.... you can't hang onto your pen, briefcase, or coffee cup anymore.... no matter how hard you try. We all stumble on the sidewalk occasionally. We all drop things, too. Don't obsess over this. "Perceived weakness" is part of the whole anxiety trip! Real weakness from ALS doesn't come and go. It comes.... it stays... and it gets progressively worse. You'd know if you had ALS related weakness.... it wouldn't leave you guessing. ALS is a disease of progressive, asymmetrical weakness. Fasciculations associated with ALS only happen in muscles that are weak and dying. These fasciculations are usually very fine and rhythmic, and they occur after real weakness has been noticed. Widespread body twitches that come and go, move around the body, and that one can easily see and feel are not characteristic of ALS. If in fact all of your twitching areas were indeed affected by ALS, you'd be bedridden by now. But you're not because you don't have ALS. You have BFS.

For your own peace of mind, I hope you get to see your doctor for some reassurance soon! The worst part of BFS is the mind games.

Hang in there, my friend! You're O.K., and things will get better! Keep talking to folks on this board. I find that it helps.

John
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Sir Winston Churchill
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Re: Do l have ALS??? Scared to death! Please help!

Postby Scandinavian girl on November 10th, 2012, 4:25 pm

Many great answers here. Floydian, you sound like me.. But did you have an infection before the nerve pain started? I did..
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Re: Do l have ALS??? Scared to death! Please help!

Postby Scandinavian girl on November 10th, 2012, 4:35 pm

Twichinjohnny, john: i recognize so much of what you are writing!! My fingers shake just like you describe, excactly! I've been very scared af MS too, and have to admit I still are...mostly because of all the sensory symptoms, and feeling of walking on needles, dizzy, seeing dots, and the nerve pain, and numbness..

Emil:listen to the people that have answered you here, they know what they are talking about, more than many doctors actually..

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Re: Do l have ALS??? Scared to death! Please help!

Postby twitchinjohnny on November 10th, 2012, 11:56 pm

Hi, Scandinavian girl....

I've had lots of "pins & needles" and prickly sensations in my feet. This has been with me for years. I get these paraesthesia in other places, too. You see dots? You and me both. I've been to a neurological opthalmologist for a work-up on all of my weird visual experiences. I see flashing lights in my peripheral vision from time to time. I also see lots of "floaters," and rainbow-spectrum light images in my direct vision sometimes. Under certain conditions, I also se what looks like gray static in the air... all around. Almost like a fine rain. Very weird. More than one doctor has told me that this is a migraine symptom. I don't get the headaches, thank God. But I do get the visual phenomenon. It's caused by blood vessel spasms in the brain. I find that a night of drinking alcohol can easily trigger this stuff the next morning.

I've had a couple of MRI's to rule-out MS and brain tumors. You're probably suffering from a lot of the same weirdness that the rest of us BFS types have. Try to keep cool. Easier said than done... I know. The anxiety trip only makes things worse. You've got lots of good company here. I say, if you and I are moving around O.K. today in spite of all of our worries, then we don't have MS, ALS, or any other terrible disease. We have BFS. It's really unpleasant. It's panic inducing at times. But... it ain't gonna kill or cripple us.

Hang in there!
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 11th, 2012, 2:52 pm

@Scandinavian girl, I don't know if I had an infection. A few months before it started I had a rabies vaccination and 2 fractured ribs.
I asked my doctors if that could be related to my symptoms but they said it's unlikely although they can't say it with 100% certainty. So I guess I will never know.
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Re: Do l have ALS??? Scared to death! Please help!

Postby LApea on November 11th, 2012, 3:05 pm

That's interesting Floydian. I had two vaccinations right before this as well. One for Petussis/Tetanus, and the other for Rubella. One student doctor told me it may have irritated my nerves, but the actual doctor threw that theory out the window, so who knows.

Emil, nothing you have described is anything different from what I have read a hundred times here on the boards. You are in the right place, there are a lot of kind people here to help share their experience and knowledge.
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 11th, 2012, 4:13 pm

Jay, I still think it's quite possible that these vaccinations somehow messed up our nerve system.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Scandinavian girl on November 12th, 2012, 5:24 am

Floydian: yes, I also think the vaccination is relevant, it does the same to our body as an infection, and many with BFS started with an infection.

Twitchinjohnny: So you also have the prickly sensations in your feet? That's exactly what I have, but I didn't have the word "prickly" in my English, but now you wrote it I understand it's the right word. You are a man and probably havn't tried thight jeans or so, but this makes my pricking ets much worse/unbearable. I can have the same in arms, making me use t-skirts in stead of jumpers/sweathers..have you noticed that this sensations get worse with fabric close to your skin?? (maybe in upper body since you are a man) I also have many other paresthesias-sensations. It's really bad and my worst symtom, togehther with the pain. But the pain are not ALWAYS there, but the paresthesias are..

Thanks for your comforting words. I try to stay cool, but it's very hard, I'm so afraid I will never get better. I'm not only afraid I have something bad, like MS, but that I will never get better.. I get the impression that many here are afraid of serious disease, I am too, but I'm also so afraid of not getting better, my symtoms are so bad I think they are very hard to live with.

Interessting with the migraine. I have had migraine for 12 years, but strangely enough had very little of this since my BFS (or what it is) started.. but I definately see dots, red/brown - and they move in my vision field, and I've seen "stars"/blinking light in the whole vision field and I've seen double and a lot of "blurry" vision. Maybe it's sign for migraine without the pain I had before?? But when I had migraine, I didn't see dots and blinking stars and double and blury... because of all my symptoms, I took a VEP (visual response potential) - a test usually taken when MS is possible, and for me it was pathological for both eyes - meeing I've probably had a inflammation on the optic nerves, and the neurologist told me that nearly 50 % of people getting the results I did, develop MS, and that this test is often the first pathological finding. They also found a signal change in my MR in april, that was not there in feb, so therefore, I got much more afraid of MS, and still are.. But despite all this, no one has a plan to test me futher, if I don't develope more/even worse symptoms. Different hopsitals have done different testing, and no one see my case in total:( I hope of all my heard that I will be better and that all the people in here also will.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 12th, 2012, 5:43 am

twitchinjohnny wrote:I also see lots of "floaters,"

I also see a lot of floaters but I have them for many years now, the medical name for that is "mouches volantes".
Try to look at a white wall or a clear blue sky..... :roll: In my case I don't think it's related to bfs but it might be for others.
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Re: Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 12th, 2012, 8:23 am

Hi again!
twitchinjohnny Thanx alot for your comforting posts. It really helps. :D

Every day is a new struggle for me. One symtom after the orther is eating me alive. Two day ago l noticed my shakings, today l feel pain in my arms. The pain fells like strains and could be as long as 10 cm/5 inch. It hurts as if l had a knife stuck into my arms, the pain will go away after about 2 min or can last longer. Sometimes the paint could travel to other areas such as the fingers and to the other arm. And this symtom appear in a relax mode and when lm using my arms.

Does this symtom description fits the classic BFS suffer?

Btw, to you all who sees weird things with your eyes. l do also have this condtion and lts called Eyemigraine (in Sweden). l do experience the eye dots, and eye black outs only at the left eye.
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Re: Do l have ALS??? Scared to death! Please help!

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