BFS Club: 8 Months No Weakness!

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twinTwosome

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I think you are an official member of the BFS club! With no weakness after 8 months, you can pretty much guarantee you are fine. Let us know what your neurologist says. We all love a good "my neurologist says BFS" story.
 
thank you! i'm wondering, when i see the neurologist, should I mention this is what I think I have? Or leave it completely to him to determine? I'm hoping this is something he's commonly seen! Or at least knows of!
 
Sounds like typical bfs hang in there. I am approaching my one year mark and all my twitching cramping popping has all come back after being gone for months. I'm putting it all on anxiety and have started taking all my meds again lexapro and ativan they help a lot but are not perfect. I'm willing to bet my all my twitches that your neuro will tell you to get your anxiety under control.And listen to Kit mario mangler, high priority,and bill and a few others they have all saved my life. Hang in there.
 
Hi Teacher :D) I have to start by saying...you sound like almost every single other person posting here for the 1st time. As for words of encouragement...you have seen a Doctor, who is not at all concerned about your twitching (thats because its BFS twitching and not scary twitching, although, BFS twitching can be scary if you let it ;) ), you have no weakness after 8 months, you are just fine. :D) I doubt your neuro appointment is necessary for anything other than reassuring you that these twitches are bengin and that you are perfectly healthy. Definitely keep the appointment because that reassurance...is priceless when you are worrying about whats going on. The anxiety that the twitching (and other BFS symptoms) cause does nothing but fuel the twitches. It is a horrible cycle that people get caught up in. I can PROMISE you, that once your anxiety is under control...the rest will follow right along. I'm sure you know the #1 BFS Rule by reading other posts on this forum. Do not look to the internet to help you figure out what is wrong...it is full of outdated (if not just plain out incorrect) information and it does not know your exact situation...therefore...it often brings up results that are not even remotely related to what you were looking for to begin with...then you read something that you dont completely understand, or that is incorrect, and here comes more anxiety...trust me...its a bad thing just dont do it. If you must search your symptoms...do it here on the forum. There is nothing that you can describe that hasnt already been described by dozens of people before you. :D) By the way...you're way too young to have the scary stuff. ;) BFS is a great challenge to our self control...but it is a winnable challenge. Let us know how your neuro appt goes...and if you need help keeping the "Yuck Monster" out of your thoughts...just holla :D)BTW...that was very sweet Gerry, but I'm not sure who you are. :D)
 
Sounds like BFS to me! Once you have your neurological exam you will feel better. Many us have had twitching for months and even years. I know the anxiety is hard but that is what this board is for. Hang in there. You are not alone.
 
The fact that your symptoms came after a flu shot is interesting and gives a little support to an immune-related cause. I am a teacher too and mine started with the eye, then the calves, and then all over. I have evidence of immune abnormalities so an immune-cause is the best guess so far in my case even though I don't recall having a virus and did not have a vaccine. There is a condition known as GBS that is very severe that is frequently associated with vaccines. I have often wondered if what I have is a mild version of what happens in those cases. People with GBS are struck hard but almost always completely recover. Thanks for sharing your story. Krackersones
 
My symptoms started after a bad virus and subsequent infection, and I see that this is also a trigger for GBS. (looked up on the cdc site: ). Well, it doesn't matter does it? I mean, if I did have GBS, onset was a long time ago so it would be gone by now - perhaps leaving some nerve issues. There's been lots of talk about damaged immune systems etc. but nobody has brought GBS up before - learn something new every day! teacher1 - not to worry you are in like company here. As far of your question about your neuro visit, I suggest you let him/her proceed with the clinical and let them summarize their results for you first. If they do not bring up bfs or pnhe then ask about it and it's relationship to their Dx. Make sure you ask all your questions so you won't be left with too many questions to plague you afterward as this is a common problem with this syndrome. It is it's nature to be perplexing and medically loaded at the same time so better to get as much understanding as you can from the beginning. Welcome and let us know how it goes.
 
I didn't mean to suggest anyone here had typical GBS. I just thought maybe what some of us have is a much milder but similar situation in terms of mechanisms involved. I had burning in my toes many years ago. It just happened a few times but was so intense the times it did happen it caused me to start wearing only open toe shoes as a preventative measure. I couldn't reproduce the feeling by touching my toes so I just didn't give it much thought. Then last year I got eye twitching for a week or so, then in my calves for a few days, and then all over (face, lips, tongue, arms, back, stomach, sides, hands, feet, neck, etc). The twitching in my facial cheeks was visible if you looked real close (very strange). With the evidence of demyelination and immune abnormalities it just makes me see the connection with GBS/CIDP although no one has specifically diagnosed me with either. I have read reports on these conditions that suggests there are lots of atypical forms that get missed. One report I read was of a model who suddenly couldn't smile. She was dx with GBS. They said her situation was rare as the smile problem was her only symptom and she had brisk reflexes which also wasn't normal. So I figure if such an atypical scenario as this could be labeled a variant of GBS why couldn't my case. I think the labels are not that important except they satisfy the need to put a name to what is going on in your body. The bottom line I get over and over at my neuro visits is yes we think something happened to you related to your immune system and yes it is unusual in presentation and no you shouldn't do anything about the cause because the risks outweigh the benefits when you are not disabled and have full strength and no it does not look at all like ALS because of your sensory nerve involvement and signs of demyelination and the sudden, widespread onset without weakness. I think only the few researcher-type neuromuscular specialists are the ones interested in these atypical cases since the others I saw just looked at me and said you seem clinically fine and have a clean EMG so no need to do anything else. This is not to say the stuff I did was a good idea but it did shed more light on what was going on and I am now an official case on record somewhere that may lead to a better understanding of what can happen to the body neurologically even if it is mild.
 
an example of a mercury contamination by a flu shot causing an autoimmune response....sounds like typical bfs.i had opened another thread on mercury contamination causing neurological autoimmune responses, in my case i suspect my amalgam fillings....
 
LisaLM - I never thought 'I had GBS!' just that if I had a mild variant, it would be over by now and wouldn't matter because it had left few scars. I am not into Dr Google, it is because you don't know me well that you suppose this. There is evidence that people have reactions to viruses and infections that can tip off or trigger other illnesses (neural or otherwise) - I think that is a valid point to bring up. In all of nature there are tipping points and this is what is curious. What we all know is that we were fine with little or normal amounts of nerve hyperexcitablilty, and then one day that was no longer the case. Exploring the idea that it may have been a viral trigger or some kind of house of cards effect within our bodies set off by some tipping point (stress, virus, car crash) is not conclusion jumping. You don't have to be a medical professional to ponder this stuff & differing views don't have to be thought of as declarations.A parallel is the way so many of us came down with pnhe after an infection or bad virus - in the end it may not matter because we did get over the infection. How we are affected by various infections, etc., seems to be very individual - one person can get a flu and be fine in a week, another can end up in the hospital (where I volunteered for years until I couldn't deal with it anymore.) Personally, I am relieved that I am not ill and in the hospital and have some rather innocuous & non-fatal problems that I can live with. I feel that all hospital workers, docs, nurses, specialists, are brave to work in such a field where life sometimes hangs in the balance and so many depend on you. Hats off!
 
Boy take one afternoon off and wow :eek: :LOL: Ok so we are good then no one has GBS or Mad cow but we all have BFS YAY! Seriously Chris, welcome to the board, and yes it sounds like BFS. I would keep the neuro appt just because. You can discuss with him your thoughts about BFS is you so choose. If he is familiar with it you may well get you dx of this. If not he may be inclined to listen and agree. Either way, I do believe that your clinical exam will be good and although this condition can be quite...distracting :rolleyes: you will find that you will be fine.Be wellKit
 
I am glad that there are many here that are open to theories. The only reason I began exploring GBS is because my doctor mentioned CIDP as related to what he thought was going on with me but then he said I don't have CIDP (at least in the typical way it presents because fasics are not typical). However, his own standard boilerplate EMG template states at the bottom that fasics can be seen in CIDP even though no fasics showed up on my EMG. For those not familiar, CIDP is thought to be a more chronic, slower progressing, sometimes relapsing form of GBS. So just the mention of CIDP sent me to boards where those dx with the condition discussed their symptoms. There are many on those boards with GBS and CIDP that complain of twitching. There is also a women with a website called demyelinatedbutnotdestoyed who has a dx of CIDP who also complains of widespread twitching and spasms including tongue twitching. So Kit is right that fasics are not common with GBS so either it can rarely be associated or those with the fasics were misdiagnosed.I also explored boards for those diagnosed with Charcot-Marie-Tooth syndrome (a hereditary neuropathy) that causes demyelination. Some of them also complained of twitching/fascics. I think when people with GBS/CIDP/Charcot-Marie have serious weakness the twitching is just not big deal to anyone so there are probably a few more with the symptoms but they don't dwell on it and the doctor never focuses there. One of the GBS patients on the board said she thought her twitching was a sign of healing, so she liked it. All of this is just theorizing that may never have any practical consequence. But then again, the right question to the right doctor may lead to the right solution for someone down the road. When my doctor tells me I may have my own unique condition because he has never seen anything exactly like it before, I feel that my theorizing is as good as any.
 
Krackersones, read this thread, and you will find someone who reminds me of you. Jodi was, and still is presumably, an intelligent, witty, insightful person; except that she had a major ass blind spot when it came to what was going on in her life. We all have trouble looking at ourselves objectively, but this post describes a lot. Jodi was quite open about all the things that she had, except that she never had them. A new diagnosis of her ailment would supersede the last one, and so it went. Eventually she settled on a thyroid problem.I'm not trying to belittle her, because she was/is a great person. She, like you, invested enormous energy into finding out why she felt the way she did. However, in the end, I think she just had to come to some level of acceptance and move on.Anyway, I hope you get something out of it.Basso
 
Basso,Trying to solve your own medical mystery is exhausting and does steal time away from your life. I won't deny that. I read the thread you pasted and do see many similarities with myself. My parents have both described me as "relentless" when I get my mind focused on something and this quality was observed by them as soon as I could verbally communicate so maybe it is genetic. I have also had several experiences with diseases and diagnoses that I think put me on this path of aggressive self-advocacy.The first was hearing my father recount that he almost died twice and he would have if he hadn't dx'd himself. The first is when he had appendicitis and the second is when he had rocky mountain spotted fever. He was dismissed by doctors both times until he came in with his proposed dx. The second time he even found the tick himself and connected it with the dx.Later my mother, a nurse who specialized in treating HIV patients in the 80s, was stuck by a needle from an HIV infected person. I was still a teenager but spent thousands of hours trying to understand the disease, the chances of it being transmitted through the incident involving my mom, the accuracy of the tests, the chances of it being passed to my father. I was scared of losing my parents and having to raise my younger siblings. I kept this to myself, except when I went in to speak with the infection control doctor where my mother worked. He told me to "embrace my inner child." That didn't help much. I am sure I lost of lot of joy in living from the worry this caused me but I did go on living. I was in Hawaii at the time and went to the beach daily and was a very successful student.I also had breast lumps found in my breast and was told by a surgeon and a subsequent radiologist that it had been removed, biopsied, and found benign. However, I had a weird feeling about the way the radiologist spoke to me (he spoke in an uncertain manner) so I requested his report. His report mentioned a finding he labeled fat that seemed very similar in size to the lump he said was removed. So I got all my films and walked them over to another doctor who walked them over to the radiologist on call at the hospital. The on call radiologist said without hesitation that the lump was never removed. The original radiologist later admitted he was wrong and blamed it on how the breasts are difficult to interpret since things move and change etc. Anyway, the thing was ultimately benign but it is hard to forget that you can't just trust doctors blindly if you have instincts that tell you something. Doctors are sometimes wrong.Finally, I went through a period of zealously having my body checked for skin cancer. The ordeal taught me that my doctors were treating me to make money and reading my slides to support getting insurance coverage and not acting in any way that would be considered ethical. I went to extremes to prove this point which ultimately ended in a personal phone call from a man referred to as a leading specialist in melanoma and listed among a short list of masters of dermatopathology. This man told me my doctors were "criminals." I was shocked to have a doctor go out of his way to call and tell me that. Another doctor I saw who knew this doctor called him to confront him about what he was doing. She told me he admitted he acted unethically to cover the cost of the lasers he had to purchase. She told me of his admission because she thought she owed me this. This whole experience was traumatizing. It shook my confidence in being able to choose doctors. The doctor I trusted was an university professor and authored a book on dermatology used in the medical school. But many things happened that didn't add up so I did my own digging and ultimately I was told I was not crazy but right on the money. None of my slides were read as melanoma but were read as "atypical" when they were totally "typical." This reading justified the insurance companies payment and justified removal of more and more moles none of which were necessary.All of this does not mean my neuros are not competent or are criminals or any of that. In fact, I do place trust in them. I greatly trust the ones I see now because they don't give me definitive answers that I know aren't there. I try to educate myself and then engage in a discussion with my doctors to reach a reasonable approach to my care. Every day I move closer to putting this episode in the background of my life but I'm not ever going to be someone who can just go to a doctor and have him or her tell me "X" and then say OK. I will ask questions and I will evaluate whether the answers make sense and I will get other opinions. I am better however at doing this more quickly and knowing when doing more will not help me. Unlike melanoma, with this nerve stuff there is really no advantage to having a dx sooner rather than later if you are not getting weak by the day. So I feel less sense of urgency. I'm hoping to only see the doctor twice a year until this stuff resolves which I hope one day it does. If in the end all it does is allow my doctor to tell the next patient like me that I exist and am fine years later, that will be worth it. By the way, I went to my Jazzercise class today and danced for an hour to Michael Jackson music. It was great!! I am grateful for all I can do. This is true even if I'm a little intense when it comes to the other type of dance we all have to do to some degree when it comes to having human bodies and dealing with the medical profession.
 
Hey, Jro. You describe an interesting litany of abuses by the medical profession and also the pain that you have had to endure because of it. Let me say that I don't wish to invalidate your personal journey, your suffering, your insight, or your passion to understand what it is you wish to understand. I don't judge you or see you as any less because your way is different than mine. We all have our "things," which we do, and which it seems we must do. It is like the wiring to go down the path we are going down is unalterable. So, please take my following comments in that light. What you see is a pattern of doctors getting it wrong. What you see is that through hyper-vigilance on your part you were able to obtain the correct information, and only then. What I see is someone who had a childhood that she didn't feel she had any control over. I see someone who feared the loss of both her parents, and all that it would entail. I can't imagine how terrifying it must have been to feel that you might have to become the care-giver for younger siblings, or that you might have to take on the role of bread-winner. This alone would lead to a repression of self; a repression of the authentic person we were, into someone we thought we ought to be. It seems, Krackersones, that it wasn't safe for you to be you, because if you allowed that, then you allowed that one of your parents might abandon you through death. Your dad told you of near death experiences where only through his own intrepidness and ingenuity he was able to save himself. Your mother had an accident that could have resulted in death. An accident is a loss of control, isn't it? Maybe she didn't cover all her bases and through a momentary lapse of attention stuck herself. All you could do is wait for the axe to fall, or throw yourself into studying about it, in order to gain some semblance of control in your own life.In a way, you grew up to be like your parents. They had near death experiences and now you are having your own. That is the pattern that I see. I see that, once upon a time, a frightened young girl had to worry too much about her parents, and the potential loss of them in her life, and as such decided that she must find a way of establishing some kind of "control," in order stave off this eventuality. You mentioned once that your husband "loves me just the way I am." That struck me as odd, because why wouldn't he, and why would that be important for you tell a board full of strangers? Is it because you are fearful of losing your husband in some way? Do you think it is possible that you are establishing control in your marriage through once again having an "ailment" to deal with? That is, as long as you are the one who is ill and suffering, your husband won't be?A child should feel safe. A child should be able to be who they are not have to worry about if parents are going to disapprove of them, be angry with them, hurt them, and certainly shouldn't have to worry about abandonment. I know this is highly personal, but as you are saying personal things on the board, I have given myself license to comment on them. I know that in my own childhood I always worried that my mother would kill herself, or just wander away and never come back. She never said as much, but I intuitively knew something was off-kilter. Much later on in life my mother admitted to me that she had often thought of leaving the family and sometimes thought she might just be as well off if she threw herself off the bridge; which was a bridge not five minutes walk from our home. It hurt like hell to discover that about my childhood, but it also released me from a huge burden. I understood, for the first time, some of the reasons I had for behaving in the way that I did.Again, I am not an authority on anything, just a fellow traveller trying to make sense of it all.Teacher: Please forgive me for having highjacked your thread, but these things morph into other areas, I'm afraid. Your symptoms are consistent with bfs, and what the others have said is all very good advice and commiseration. Welcome to the board. :D)Basso
 
Basso,Your points are right on target and I appreciate your sharing your similar fears as a child. My past like everyone else's shapes how I deal with the present and the inevitable crises that have and will face me in one form or another as I live this life. I think it helps to try and understand why we are the way we are as only then can we appreciate a different perspective that may allow us to move past negative ways of seeing or dealing with things. Thank you for helping me and others see a different perspective even if it is very hard to change that wiring that seems to be intractable.Krackersones
 
Jennifer, Basso,Beautiful and respectful debate between you 2. Both of you have been major contributors on the board, even though you are sharing your experiences from two different viewpoints, the contribution is invaluable. For me, the "beyond BFS " posts are truly the ones that shapes this common experience of ours, into a better, wiser and transcendent context.Bravo,Eduardo.P.S: Jro, If my memory doesn't betrays me, I think you and me are about to celebrate our 1st BFS anniversary?Any ways, Happy 1st Anniversary Jennifer, keep getting better! :) :) :) :) :) !!!!!!
 
Just a quick word of advice on the visit to the neuro - mine did the clinical, said I was fine, and said he'd order the MRIs and EMG just so I was as convinced as he that what I had was benign. Hit the nail on the head, but never mentioned BFS. I pulled a copy of "About BFS" from this site out and asked if that is what I had. He said that it was interesting that someone had actually named the syndrome, and that yes, that's what it was. My point is, he might not put a name to it (my guy was into his 60's so it'd been a while since med school) and if you need that label, bring him something to confirm it. But I agree, wait until he's done diagnosing you first. BTW, my primary care doc had never heard of BFS.
 

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