Freak Out Mode: What to Do?

I am still going through freak out mode because of several things going on. For instance I am from Texas so when I make my Hook'em Horn sign on my right hand my pinky will start to shake and slowly drop down. I am able to bring it back up but it will shake again and then will drop again. Also the constant vibrations in my feet that seem to almost go on forever. So I did a very bad thing and looked on this emg website and it kinda well not kinda but REALLY scared the pants off of me. So today I made an appointment for SEpt with the Als expert and saw one of the doctors who performed 2 of my EMGS and he said he can't tell me why my pinky does that but said that after the emgs he found absolutely no evidence of als. He told me that if it is benign just to basicaly get a grip on it and know it is going to happen and get through it. But this seems to be a new symptom for me and having 5 emgs by 4 different doctors he said that I am pretty safe that no one missed something. It just seems like I have definite weakness in this pinky finger and reading on that website last night it freaked me out.

Does anyone think an emg can change that quickly . I just had it done in this limb 3 weeks ago and it was ok. I obviously need some desperate help and here we go again spending a ton of money and off to Houston to see Dr. Appell all because I having a difficult time with these symptoms .


Please help anyone!!!!!!!


Leigh

I forgot one more thing. My right foot on top is constanly sore these days with twitching in my ankles. any one else get this

Leigh

Hi Leigh.
I'm really sorry that you are struggling so much.

Let me ask you something, and please don't think I'm being harsh. This is just one concerned friend, asking another friend some tough questions.

If you won't listen to your physician who has personally examined and tested you himself, why should we think you are going to listen to us? Why should we even try?

You've had multiple emg's and exams by qualified physicians, you've been told that you don't have **S, yet you can't keep yourself from wondering, and doing your own renegade research. Why is that, leigh? Can so many doctors and tests all be wrong? What is it about "the dark side" that is so attractive? You have massive evidence to the contrary, yet you believe the ONE thing you read, (that you can't possibly trust, or necessarily understand...) and down you go in the quick-sand again.

What you might ask yourself is why you can't seem to accept your benign diagnosis? Why do you keep torturing yourself by going to other websites, when you KNOW that those sites are filled with horror stories and sad accounts that will only serve to scare the p-iss out of you.

It does none of us ANY good if we tell you, YES bfs causes every symptom you are describing, UNLESS you are willing to hear, and accept that what you have is, in fact bfs.

Let it sink in, leigh. We've all been where you are, and we are all okay. You will be, too. There is no harm or danger in accepting goodness in your life. This isn't about karma, or pay-back, knocking wood, or tempting fate. Just receive the blessing of wholeness and allow the curse of the FEAR of a dreaded disease to fall away. It isn't yours to keep, my friend.

I couldn't even walk when my bfs journey began. Forget about a shaking pinky, I shook throughout my entire body, 24/7. I couldn't feed myself, or drive a car. Yet, here I am, fine and dandy, and better than ever.

You deserve to be happy and well, and at peace. You won't find peace on those sights. Let the nagging voices and the "yeah-buts" be silenced. Tell them to shut the hell up. You don't need them in your life.

It's all about behavior modification. Stop googling, stop listening to your every fear, and do whatever it takes to NOT focus on your silly symptoms.

That's what worked for me.

Blessings and hugs,
Sue

Suzie Q,

Talk about a kick in the butt that was harsh but I have to say well deserved. Let me tell you why I am having such a difficult time. It is because Benign Fasiculations does not cause any pain and I have been to many neuros who have told me this. So part of me says are we all kidding ourselves into thinking this is really a syndrome when to my knowledge aND ALL OF THE NEUROS I HAVE BEEN TO NO ONE HAS CALLED THIS A SYNDROME. They all say that they just don't know why we have these symptoms. DON'T GET ME WRONG I AM NOT SAYING IT CANNOT EXIST IT IS JUST IF YOU SAY LISTEN TO YOUR DOCTORS WELL MINE ARE ALL SAYING THAT BENIGN FASICULATIONS CAUSE NO PAIN WHAT SO EVER JUST FASiculations only. Also like yourself and Kit and many other people on this site my husband is in the medical industry and we have many friends mostly all neurosurgeons , urologists and ENTS and radiologist etc... and no one has any clue about any of this stuff just that Benign fasiculations are just that Benign fasiculations....... Not pain not tremoring not shaking so who do we believe our doctors who are not validating these symtoms or us on this site who are actually going through these terrible symptom and having to experience them blindsided with no direction??????? So sorry to be such a burden but the practical side of me would like to know who to listen to???


And by the way I don't take your post in a negative way (even though I know your frustration with me) but I just refuse to sit back when I think there might be something I can be doing to find out more.

Thanks
leigh

Sue,

By the way what kind of testing have you had. Have you had mris and emgs to rule out ms and als????? Just curious!!!!

Thanks
Leigh

Leigh,

I would check the site, too, if I were you because pain is definitely a symtpom of PNH/BFS/Cramp-fasciculation syndrome- we all fall under a lot of different catagories. There are many different symtpoms we all have and pain is often one of them. I had an EMG and I have pain as well as all the other bizzaro symptoms. I don't look at sites that will upset me or fuel my fear and I repeat to myself what my doctor, and the other people have told me on this site, which is that it is a benign condition. The symptoms make it very hard to believe sometimes, but have faith that they are.

Take care,
Sir_Trouserz

Hi Leigh,
Yes, I've had every conceivable diagnostic test and been to every possible specialist. Emg's, mri's, lumbar puncture, evoked potentials, eye exams, blood-work, etc, etc.

That's why I so understand where you are coming from, and, if possible would like to help you avoid the pain that I suffered at my own hands.

My neurologists didn't know what was wrong with me either. My rheumatologist finally told me I had fibromyalgia syndrome, because he couldn't figure out what else it could be.

But after reading THIS board, and "bfs in a nutshell," I knew that I'd found my home. And, once I told my doctor what I thought I had, he completely concurred.

He still didn't understand, himself, that bfs seems to pair itself with tremoring, perceived weakness, tingling, pain, cramps, clumsy hands, and every other weird symptom under the sun. I think he was just relieved, as I was, to finally have a diagnosis that made sense.

I'm not frustrated with you at all, and I'm sorry I came off that way. I'm just wanting to help you get through this, somehow.

The doctors are telling you that what you have is benign. No, not all of them are well-versed in the specifics of bfs symptoms. That's why this board is such a Godsend.

So, when you read on here about all the many different people who share your same symptoms, do you just assume yours are worse, or different? Because when I first visited this board, I felt immediately comforted by the many folks who'd experienced the same stuff as I did. Perhaps that was foolish for me to do, seeing as how none of us (save kit, ) ) are doctors, but I haven't looked back, and my symptoms have significantly diminished since then.

We can never discount the power of the mind and anxiety over our bodies. In my case, once I got the anxiety and fear under control, my symptoms vastly improved.

Blessings,
Sue

Suzie,

I do appreciate all of your comments ( good or bad) it is something that we just sometimes need to hear. In regard to what you asked about do I think my symptoms are different or worse than everyone elses? When I first found this board in November of last year I immediately felt comforted as I felt I had finally found people who had been experiencing exactly what I had been going through and felt very reassured as I was not seeing the als doctor until January so this board got me through a very rough time but I was comforted. It wasn't until the symptoms began to change in and vary so much that I started thinking maybe I didn't relate so much that maybe what I had was so different or I was going to be that one person that had something different and the anxiety began to kick in.

The tremors started and I called my als specialist in Houston and he assured me that tremors are not part of benign fasiculations and that is when I really got nervous and so and so on. So all of that led me to believe that I was different than everyone else and have been determined ever since to keep searching until I have some sort of answer to make some sense out of all of this. But yes I feel I have gone throught some very dark times and as alot of you know being a mom and wife and trying to hold your head high and act like you feel good and still trying to work and raise kids it finally takes a toll on you.

I think time is the one thing that seems to help a lot of people on this board. Just having time on your side and enduring alot of the symptoms and seeing that nothing else is going to happen is part of the healing process to me. I appreciate all of your help and pray everyday that I can get there soon.

Sincerely,
Leigh

If tremors are not part of BFS, then I think all of us on this board are in trouble. I guess some of us might define tremors differently, though. Do you mean, just a shaking of a limb or something? I get tremors along with my twitching all the time. In fact, just tonight I was laying on the couch on my right side watching a movie with the family, and I was twitching badly on the side I was laying on, and also having tremors in my right shoulder. Tremors, meaning the area shakes for some time. It can come and go, but for me, tremors usually will stay there as long as you are stressing the area in some way. I have had that for years, though. I remember playing tennis, and I would have this thing with my arm and hand that I played tennis with, where if I would put it a certain way, it would just shake away. I get that occasionally now, like if I put my arm on a counter, if I hit in in the right spot, my hand and upper arm will tremor until I change positions. You are lucky in that you've had alot of testing, and that should be ressuring. I, on the other hand, haven't really had anything other than an in office exam by my neuro, and some bloodwork. I was kind of taking his advice with the "wait and see" thing, and figuring time was on my side here. Anyway, I just wanted to mention the tremor thing to you. Good luck, Val

Your thoughts are conflicted. Who should you believe, an Internet board full of unqualified strangers who say you are fine, or the doctors who have given you the all clear? The cyber-people say all of these symptoms are "oh so typical of BFS," while the docs say that fasciculations are the hallmark of BFS, and recognize no other symptoms. There is concurrence though, for both parties are confident in your ultimate wellness, that what you have is benign. So, it is not accepting which party is right, because both parties, on this front at least, agree. So far, so good. )

But, there are these "pesky symptoms," and it seems that in this area, perhaps, the medical establishment, and our BFS community are not in complete alignment. You have an inquiring mind, and so you say..."why is that. Surely if we tremor, feel pain, shake, shimmy and roll with BFS, then it might not be BFS, but something else, a precursor of something awful." However, while you may think that these odd collection of symptoms may point to something else, you can not at all say that this something else is either als, or ms, because you have been too thoroughly tested for this to be true. Right?

So, we have established, or rather your doctors have, that you are well, in so far as a medical diagnosis is concerned. You have seen enough doctors to have had your second opinion and there is concurrence all round. Now to the symptoms, that seem so outlandish, and that don't seem to be known about, at least not widely within the medical community. You think, "how can they not know, and if they don't know, then how can WE ever be really sure that what we have isn't something sinister, after all?" Well, they don't know for many reasons, the most important of which, it is benign. Doctors are taught to deal with pathology, and so ascribe the term benign to anything that doesn't fall within real pathology. The fact that you "feel" sick, does not make you sick in the eyes of the medical community. For this "feeling" of unwellness, you must strive for a different kind of healing, one that doesn't really involve doctors. There are all manner of conditions and syndromes that affect people, ours is one of the latest to come down the pike. No doubt there have been people since the beginning of time that have twitched et al, and experienced symptoms such as we have, but they didn't have a computer to delve into, and thus form a community, a community that could share experiences and hence, delineate a pattern that conforms rather perfectly to a syndrome; that being BFS. Apparently Lot had bfs, and when the people of Sodom were being turned into pillars of salt, his twitching was of a most excruciating kind.

So, you have two side of the scale, which perfectly balance one another in describing our wellness. We have the medical establishment that confirms that you do not have a disease, and you have a bfs community that, through enormous empirical data and shared experience, confirms that you are likewise well.

I, like LisaLM (who wrote a totally kick-ass, kick-in-the-ass to you ) ) found this site evidence enough for belief in my wellness. I am not saying that this should be the norm, obviously we all need to heal at our own rate. However, this community really has established that BFS is a syndrome with a host of symptoms, all of which you fit perfectly.

Leigh, your first consideration, I think, must be to recognize yourself as a whole and well person. Even a collection of the greatest minds ever could not establish why we are even alive, on a planet that spins on it's axis, that orbits the sun, and that even turns within it's own galaxy. Holy shyt, I know, that is cool. Life is not a series of absolutes, but rather is a compilation of best guesses and intentions, led by an indomitable spirit that has breathed life into us. Your issues are not really "your issues." At the heart of the matter is whether you will allow yourself to feel whole again, in spite of a body that reacts differently now. You see, the thing about contracting BFS is, we heap upon it our deepest fears that existed before hand, before we felt our body twitching and tremoring. It shakes our senses, because it frees the fears from their hiding places, and brings them to the light of day. We were in a precarious balance to begin with, and BFS has challenged this balance, otherwise we would move on, because it is inherent in life to do so. I saw a fox the other day on my travels, and he was missing his beautiful tail. He moves about without it now, and one can see that he is living a full life, despite what must have seemed, at the time anyway, a rather significant loss.

Basso

AMEN, Terri!

I'll share this...

When I was being seen by a Biofeedback doc and a therapist- my symptoms GOT WORSE!!! Imagine that one???? When I take breaks from this board- my symptoms get better. I have found when I just don't think about BFS or pretend I don't have this condition- it actually responds to "treatment".

AMEN, Terri!

I'll share this...

When I was being seen by a Biofeedback doc and a therapist- my symptoms GOT WORSE!!! Imagine that one???? When I take breaks from this board- my symptoms get better. I have found when I just don't think about BFS or pretend I don't have this condition- it actually responds to "treatment".

Well if tremors are not part of BFS then I am done for because it was my first symptom and I have strong internal tremors along with external. One intenal episode was so bad it woke me up out of a sound sleep.

I will tell you alot of Dr.'s, even neuros do not know all the symptoms to BFS, actually most do not. I was lucky to see two Neuros that told me that BFS WILL cause all kinds of strange symptoms. I have been at this for over a year and a half and I know that I am not kidding myself. I am healthy just as you are. If you do not feel comfortable or if that Dr. does not have the knowledge on BFS you may want to consider another Neuro to help you with your fears. You have had to many tests done to have anything seriously wrong with you....Jenn

Leigh -

How long ago did all of your symptoms start for you? Mine going on 12 years. I've realized over the years that symptoms change. I never used to have pain, maybe an occasional cramp, but not pain in several areas at one time to varying degrees. Let me tell you about my first very bothersome find. I was holding my left hand out in front of me and trying to bend my l. thumb inward without using any of my other fingers and also trying to touch the pad below my pinky with my l. thumb without bending any fingers because I can do it with my right hand. I immediately freaked out because my left hand has always bothered me on and off. However, I asked my dad to try it and lo and behold the same thing. We are all made up differently and I found this little quirk 6 months into my journey. 8 months ago I painted my huge living room and kitchen practically by myself, with this current flare my l. arm shakes, hurts, twitches, cramps (you get it)!

I also played city leage volleyball for a time being and one evening I stopped in to get a burger after the game and my l. arm was shaking so bad I couldn't write out the check and then it got better.

My bets are that you will be fine again and another area will cause concern. I'm slowly learning that it's the nature of the beast. It's all about quelling that beast inside of our minds and thinking positive thoughts. I'm not necessarily feeling better physically, but emotionally I'm in a much better place and I know it's hard to find that place.

Sometimes we need a kick in the pants, other times we need to be taken care of. Nobody on this site wants to cause you pain or hurt you, they simply each try to help in their own way and you can take a little bit from each of them, I know I have. In fact, I got on my husband's motorcycle and we rode to the Sturgis Rally in South Dakota for 3 days! Several months ago I didn't want to leave my house!

Please read some of Chipper's posts about Cognitive Behavioral Therapy and Anxiety. There are times when I feel sorry for the neuros because they do not know what to do or say when they can't figure it out, other than to say it's not the bad, sinister stuff. I have never been diagnosed with BFS or anything else. I was simply told at Mayo Clinic in 1997 that I did not have ALS and to get on with my life. The most important thing that neuro did for me that day was tell me that I was so anxious and serious and afraid of dying that I had him convinced that I had ALS. We are very good at convincing ourselves that we will not survive or pull through and we stop living.

Try this, get out of bed tomorrow, stand up, wiggle your fingers, toes, stretch, walk, talk, eat, breathe and remind yourself that you can do all of the things necessary for life! Because you are living! Please take care of yourself and try hard to find some peace, I know I'm giving it my best shot!

Stacy