Living with BFS: Update

Highlights Only
Absolutley - cancer caused fasics. It is the immune system recognizing an invader and letting off horomones. Such a complicated body.I agree, cancer very often is preventable or caused by environmental factors. That doesn't mean some of us on the board aren't immune to those factors. As a whole, we seem to be a healthy bunch, but many of us may have been raised in smoking households or had a basement bedroom in a home totally filled with radon unbeknownst to anyone. Dana Reeve had zero risk factors for lung cancer and died at 44. In 20% of females with lung cancer, some horomonal thing makes them more susceptible. There is such stigma associated with the cancer I wonder if there might be more that people report as something else. Good news is, no cancer reports here. Just pondering all this because of those studies I can't seem to ignore. The one that found 1/3 of the people with Benign Tumors is interesting, published this year out of Mayo. But it contradicts the Oxford study -- both of them studied people with fasciculations and/or cramps.
 
Who knows? Maybe so? Although what I read often the twitching etc. precede the discovery of any tumor by months or years. It is the hyperexcitability that is the harbinger or omen signalling to look for something else. Which is why I'd think more of us would want to know about this and why more of our neuros should be on alert for this. Problem is, I think our neuros are so specialized and they are looking to rule out things like ALS, MS, Parkinson's...while oncologists would be more aware of this kind of relatively rare presentation of cancer.
 
I feel I need to step in here for just a moment. I have seen more different neurologists than anyone on this board.As we see with Matt, PNH is a condition that can be diagnosed using the latest technology. It's called the cramp fasciculation protocol test, it is a very specific type of NCV. Matt tested positive. I went to Mayo. I twitch everywhere, I mean evrywhere all day everyday with no break. My spine is currently crawling with twitches. I am at 3+ years and progressing although the I have been cleared by the highest trained ALS specialists in our country just two months ago.Many times, with standard BFS, some fascics here and there on EMG, etc. many neuros won't test for cancers. However my first neuro as well as a the Mayo clinic ran what is called the 'neuro paraneo-panel'. This tests for various antibodies as well as various proteins that are indicative of cancer. I have been negative twice now. The words from the doctor at the Mayo clinic were, "you were negative for cancer which I suspected since you tested negative for PNH and aren't showing enough for a paraneoplastic syndrome." She said this even though I have visible fasciculations as well as fascics detected on EMG.
 
Oh Sweet jebus...i guess this is why my therapist tells me not to come on this forum :(I have no idea what you guys are talking about and I am not gonna click on that link (Im not, im not!) but I've had this 10+ years, pretty sure I have some sort of autoimmune PNH as it disappeared completely during two pregnancies (immune system dampened) and has come back since....but please tell me I don't have to worry about a cancer element now? I couldn't handle it. This daily twitching aching shaking merry go round is enough to contend with!! I went to one neuro in 2004, emg with fascics, otherwise clean, BFS diagnosis, off you go. Never been back. I want to 'let it go' and finally move on with my life, over a decade later!!! I also want to sleep tonight...I'm so silly I come here for reassurance when ive had a bad day of symptoms or a new weird symptom, read something like this and im off sprialling! anyone else like me with this forum? It's like im playing with fire!!
 
Gregory, I know. I get it. I totally hear you. Do you hear me? You were tested for the things which concern me. You were cleared. I have not been tested for those things. I have been cleared of ALS, and that's awesome! But not cleared of these other things. It does not matter if the fasics are seen on EMG or by the eye of the doctor. If neither of those things happened are they in my imagination? Do they think I'm making it up? I don't think so. I have been seen once, given EMG in one limb by a former secretary of the clinic who was trained by several fantastic neurologists and it lasted maybe 10 minutes. I'm satisfied with it. I'm not asking for another one. Given enough time, the fasics would be seen. Both of these studies I'm talking about are about are of subjects with cramps and fasics (one of the 99 total had only cramps, no fasics). I have cramps. Every day. The first study indicated little difference if things were seen on EMG or not. Evidently the researchers at Oxford believed the subjects that showed nothing on EMG enough to investigate them and all kinds of things were found in both groups. Have you read these studies?I do not want to be shamed for asking these questions which in my mind are totally legitimate. I don't know if I'm communicating effectively, but no one seems to get the point.The point is 1/3 of subjects of both of these studies have a benign tumor, a malignant tumor, or another significant finding such as rheumatoid arthritis, malignant or benign thymoma, thyroid, diabetes etc...which means only 2/3 have truly mysterious bfs like 99.5% of us seem to have. Am I misunderstanding something here?I recognize PNH does NOT equal cancer or even something else...but chances are about 25-35% there might be something that is occult contributing to symptoms. You fell into that category. And you know that because you were tested. Most of the rest of us cannot make that claim because we weren't tested. We are not the same person. Are you saying these tests should not be necessary for the rest of us because you tested negative twice and have seen more neuros thatn the rest of us? Is that why you needed to step in here? That makes no sense. You have had a benefit we have not had. In the newest Mayo study 12 of 37 subjects had a benign tumor removed with total relief of bfcs symptoms! Why would we all not want to have that investigated?! If the symptoms are truly as bothersome as we describe, what is there to lose? I think this is important information to us. Am I missing something?Why don't we match the studies?Why do only a minority of our neuros (unlike yours) test for these things?Why does no one want to look at this?
 
Oh Sweet jebus...i guess this is why my therapist tells me not to come on this forum I have no idea what you guys are talking about and I am not gonna click on that link (Im not, im not!) but I've had this 10+ years, pretty sure I have some sort of autoimmune PNH as it disappeared completely during two pregnancies (immune system dampened) and has come back since....but please tell me I don't have to worry about a cancer element now? I couldn't handle it. This daily twitching aching shaking merry go round is enough to contend with!! I went to one neuro in 2004, emg with fascics, otherwise clean, BFS diagnosis, off you go. Never been back. I want to 'let it go' and finally move on with my life, over a decade later!!! I also want to sleep tonight...I'm so silly I come here for reassurance when ive had a bad day of symptoms or a new weird symptom, read something like this and im off sprialling! anyone else like me with this forum? It's like im playing with fire!!_____________________________________________________________________________________________________________________________________My intention is certainly not to create fear! If it does, we are easily spooked (I know, we are, part of this crap is the exaggerated startle response). I believe in order to conquer these fears we have to look them squarely in the eye and investigate by putting it to rest. Not by extra EMGs, but investigating the other known causes? How many of us theorize forever about potential causes without looking into this one that is already documented?? Is that why this subject is avoided? Is the only thing you worry about ALS? It seems that is all that is on this board, is ALS worriers. Then they get shamed for causing fear or for worrying or being anxious. But if anything else is brought up, it is ignored. Or shamed, or misunderstood because everyone is focused on ALS. There is nothing that can really be done about ALS, no real benefit to catching it early. Fact. However, there is some benefit to looking into other causes of twitching besides ALS! Especially if you don't have the health anxiety history, or even if you do, in order to move on. Especially since PNH is a very, very early symptom of worse things that can be caught early. One of these studies says the cancer outcome is better for folks with PNH paraneoplastic because the immune system is exerting powerful response and antibodies against it. Why would we not want to know this? I am pretty sure I have some kind of autoimmune thing also! When I was pregnant, I had an immune system response, my body recognized the attached ovum or whatever as a foreign invader and I had a rash for a few weeks. So, I think my body recognizes foreign things. The link isn't all bad news. One of them is a very recent study and makes this crap treatable!! Yes, I am like you...but the ALS fear is a bit irrational after having been cleared. Hard to shake, I know. Part of PNH seems to be And a cancer fear after 10 years is also irrational. Sorry, but it is. But maybe, just maybe, you have an immune reaction to a benign tumor. Do you not want to know about it? There may be a cure? The wikipedia article on PNH says 20% are paraneoplastic. Easily available information. No one mentions it.
 
I can tell you don't have ALS because you type an awfully lot quickly.Nobody is shaming you dude, don't get your panties in a wad. If you are nervous about cancer being a possibility, can you explain to me what is preventing you from walking into your neuro and politely asking for a paraneoplastic blood panel? Then once that is negative like mine was, you can go back to worrying about other diseases connected to twitching like the rest of us schmucks on here. Cancers can be ruled out with bloodwork and scans in every single case. It's not always so easy with other conditions. I guess my main point is that, if your doctor or neuro think you need a neuro-paraneo blood panel, they will order one.Welcome to the group and hope you find some peace soon.
 
Gregory,It is me, Leanne. From FB. You still haven't heard me. I'M NOT WORRIED ABOUT ALS. Any more.I feel shamed because you "need to step in" and told the guy on FB to not ask for any of the paraneoplastic tests after I'd suggested it to him because he was asking. And he shouldn't if all he is worried about is ALS. What is preventing me from walking in? Trying to conquer my anxiety and making a deal with myself to not go back for at least a year. And that has actually been SUPER helpful advice. But these studies have just come to my attention and I think they are extremely noteworthy. And I have cramps (specially noted in both of these studies) and I'm over 40. And. And. And.And also you strongly advised people like me or dared me or something not to bring these studies to see the light of day and show them to our doctors. I cannot expect my neuro to be on top of all things. There is a lot of data being produced every day in research labs around the world. Most of them get buried in the stacks. We, as a group have a TON of information, and we could be a great value to the neuros who are not aware of these small studies. So, they don't order one maybe because they are ALS specialists, not cancer specialists. We cannot expect them to order things they don't know about.I admit in some ways it is like the ALS trap of thinking you are the exception. The reason I never really freaked about the paraneoplastic word before is I feel I DO fit the typical bfs picture, AND no one here seems to ever report these things. For some reason we don't match the study. That fact alone makes it discussion worthy in my opinion. Yes, if I am cleared, I will continue to wonder what the heck is causing this circus. But actually, I think I'll have a better time moving on with all the really serious things ruled out of the way.
 
Where do I start? First I want to apologize to Matt for hijacking his post. Sorry bro.Leanne, why commit to taking a break from seeing the doctor for a year, if you are going to continue reading research, self diagnosing, hypothesizing, running statistics, etc anyway? Isn't that like licking the icing but not eating the whole cupcake too? I don't understand the logic in that process. To each his own I guess.I stand by claim that nobody should go into a neurologists office (on FB it was the dude's first visit!!) and go in asking for a bunch of tests to be ran. Nor should you go in (I dared you to do this) with medical articles in hand. They are there to treat you, not learn from someone off the street. I disagree with you wholeheartedly about your ASSUMPTIONS about the way a doctor studies his trade. I know a couple doctors personally, a gastro and an endo and they very much stay up with the latest research articles and also attend conferences regularly to advance their knowledge. That's what a good doctor does! Clearly from your writing you lack faith in the medical community.I FIND YOUR LACK OF FAITH DISTURBING.Not sure who said that (Vader) but that's what I feel with your posting. Neurologists do know and recognize paraneoplastic syndrome very well. My first neuro gave me the test without asking and this is just a general neuro from a small town. That's what he felt was necessary. I am sorry YOUR doctor did not feel it was necessary. That was his/her opinion. One piece of advice I will also give to you and everyone is that if you aren't satisfied with your first opinion, get another, and another until you are satisfied. This will differ from many on here, but whatever it takes, the end justifies the means.I KNOW you aren't scared of ALS and that is great. I don't quite understand your fear of cancer myself. I pretty much expect to get it. It's a 50/50 chance in my lifetime. Plus, there are some amazing treatment options available now and on the horizon. I will take cancer any day of the frickin week over some *beep* neurological disease. At least give me something that half the world also gets and I have a chance to fight the darn thing most of the time!I am going to give you one last quote about how most doctors think about this site and similar sites like ours. I told the previous Director of Neurology at Stanford University, (currently the Director of the ALS Clinic at Forbes Norris in San Fran) all about this webpage and this group of folks all freaking out about twitching and comparing symptoms and cures and you know what he said? ... "I wish I could get on their and tell all of you 'You are Nuts! Get on with it!' ". My wife was there and chuckled when he said this. That's how much the top doctors care about our 'collective knowledge'. Painful but true.
 
Matt, I apologize for hijacking also. I fear starting my own thread because I've been "shushed" before. Just bring up the word "yawning" and you get accused of spreading fear. Gregory, I have to respectfully disagree with you on several points. You talk out both sides of your mouth...the other day you told Andrew not to ask for things, then admitted those very things were warranted (after having it pointed out this was from Garym's mouth). You repeat not to get repeat opinions and EMGs. Trust your doctor your mantra. I agree. Unless you don't feel HEARD. You tell people to trust your doctor, now above you say to get another, then another and another opinion. That's not my issue. This is a totally different issue. We need a change of reference and focus from ALS to critically think about it. I felt heard by my doctor. I worked in a neuro clinic. I went to the U of MN library to get research articles for them and make copies for them about 2x per year in AREAS of their interest. Do you know how many neuro journals are published each month??? Any idea?? And how many articles are in each one? IMPOSSIBLE to stay completely up to date. With hospital rounding, clinic hours,...oh my gosh. And conferences. Indeed. 40 hours of continuing credits per two years is required. Heck, one conference on brain injury can use up all of that. This is a small study, less than a year old. Not at the top of the list for someone who isn't all that interested in bfs or bcfs. Nope. He'd be wanting the latest things about ALS and Muscular Dystrophy. Guilty - I do lack some faith in the medical community. They are not perfect. My best friend is dying from breast cancer. She had it 15 years ago so her doctor assumed she was out of the woods. Didn't order an MRI after she presented for back pain until sending her through months of PT. My mom almost had a heart valve replacement 7 years ago but didn't go through with it. She is 75 and absolutely FINE. She runs circles around me. Was this a necessary procedure? NO. She bolted after getting a second opinion (actually just a pre-op routine appointment) and the second cardiologist, the day before surgery said he could not sleep with himself at night if he let her go through with what was recommended. It is a cash cow. Second opinions are valuable on subjective things. But things like this, lab tests, don't lie. Don't even get me started on my mistrust of dentists (and my dad was one - a saint). I work in a hospital ER. The doctor's are remarkable and it is a top rated hospital. I can't say enough good about them. Do they know everything? No. Have I taught them a couple things? Yes. They have taught me more, but they do not know everything. I am hardly someone off the street, any more than Mitra and Patrick are. I am an intelligent person with a vested interest in this subject. Sometimes a person has to advocate for themselves.You have said before that is the value of this board - the collective experience of us all. All of the neuros we've seen. But now we're crazy. I'm simply asking for a discsussion - if neuros have ordered this panel of test or not? why or why not? Why is this not STANDARD practice??? If we want neuros to have a standard practice, they need to be made aware of these studies if they didn't already know. If it weren't for Patrick B's special interest in this subject, I'd probably never have found that journal article and I'm a bit surprised I even investigated it that far. But glad I did. Don't worry, I will be going to the doc within the next few weeks, just trying to decide whether to go to Mayo, my GP or back to the neuro (not sure it makes sense since he is an ALS specialist and I don't have ALS). I only found this study this week. If neuros recognize paraneoplastic syndromes why do they need the lab tests? Doctors learn from us, their patients and experience. A good one will treat you as if you are valuable to him/her. They will listen and observe and admit it when they have no frickin clue.Please do not judge me. I took a break from the doctor and it was a huge relief. I'd highly recommend it. I have also cut down on my "research" by about 90%. I've improved. I'm about past my ALS fears. And I too, would rather have a cancer diagnosis. Or a benign tumor that once removed would remove all the bfs crap. But I still hope I'm in the 2/3 a harmless mystery cause. This isn't as much about FEAR as it is about information. Truth is, according to this MAYO study, we have about and much chance of having our twitching caused by this as we do of having it caused by magnesium deficiency, or antibiotics, or GERD meds. We talk all day long about those things, but not this. We all hypothesize about all kinds of things and speculate...rectal twitches for heaven sake. But not this, this is taboo.
 
This will be my last reply to this posting because clearly my point isn't being taken by you. "Gregory, I have to respectfully disagree with you on several points. You talk out both sides of your mouth...the other day you told Andrew not to ask for things, then admitted those very things were warranted (after having it pointed out this was from Garym's mouth)."-- Just because Greg or Garym or Dr. Phil thinks these tests are warranted (which I do!!) DOES NOT MEAN I RECOMMEND GOING IS ASKING FOR THEM! Do you see the difference?? "You repeat not to get repeat opinions and EMGs."--Where the *beep* did I say this? I just said get as many opinions as you need. I have had five EMG's and several opinions over these three + years. Some are harder headed than others. "You tell people to trust your doctor, now above you say to get another, then another and another opinion."-- Yes, yes yes. Get as many opinions as you need UNTIL you do finally TRUST your neuro and you feel heard! Then trust and hang on. It's not always easy, but that's is the goal. Leanne, I really am struggling to see your point of this debate. If you are trying to get neurologists to change their standard practice on the tests they choose to run for their patients presenting with bodywide fasciculations then feel free to start that crusade. I don't want neuros to have a 'standard practice' as you state. Maybe they will with Obamacare, but I want individualized care that suits my case history and symptoms. Not some robot. I guess I don't care if they read these studies you mentioned. I search out the doctor with the most experience and try my best to trust his judgment, which is a struggle at times for me. I am not scared to talk about cancer or paraneoplastic syndrome. This is the place to discuss it. There is a wealth of information here and elsewhere. I was told by two neuros (including Mayo) that paraneoplastic syndrome (in their experiences, not studies they read) has always been WAY more than just twitching with some cramps. That's their experience which can't be debated. Either way, two of the six I have seen felt it was worth it to run a paraneoplastic panel so go figure. I am glad to hear about the new study that Patrick Bohan put together. I am happy for any studies about possible causes for twitching. I guess I just don't think twice about cancer because its so easy to rule out with testing. I feel this is also the reason we don't talk about it here very much. Because those of us who are OCD and take it too far like myself have had the cancer tests (like many others on here) and they were negative. We also don't have many people come here to report a tumor or cancer finding after the fact. I just think you are putting a ton of energy into this concern and its not really that big of a concern to many others besides you on this board. PS- I am not saying we are crazy. Those were the neruo's words, not my own. Although I tend to side with him most of the time when I see certain behaviors.
 

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