Living with BFS: Update

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BobJazzy

Well-known member
Just some more information on my post from earlier this week.I have had BFS for 3.5 years now. I twitch absolutely everywhere. I'm twitching right now in both thighs, boths calves, both feet, bicep, etc. Its annoying as all hell. I went in for an EMG last Friday and they tested 7 muscles (deltoid, thenar, thigh, calf, shin, back, and tongue). After that test, they gave me a Repetitive Nerve Stimulation (RNS) test. Its basically the same thing as the Nerve Conduction Study (NCS) except they zap you multiple times in a row and the zaps are much stronger. I spoke to my neurologist on Monday and he said that there has been no change to my muscles on EMG which ofcourse is excellent news (and not surprising) and also that I tested positive during the RNS and have a diagnosis of PNH. Now, I'm a little confused as to how this differs from BFS. I haven't done much research but he did say that this opens the door to a few more med options but that gabapentin is commonly used to treat PNH and I am already on gabapentin so we are going to stick with it for now and just increase the dosage if necessary.I believe that PNH is synonymous with Cramp-Fasciculation Syndrome (CFS) and BFS. But I'm not exactly sure why we all aren't given this RNS test? Has anyone else had this test done?Anyone familiar with the RNS test and how PNH is different than BFS (if at all)?-MattP.S. I'm still waiting for my follow up on Dec. 10th so I'll know more about the test results then. But my neurologist says this is all good news.
 
I probably know as much as you know from that one wikipedia article which doesn't clarify when bfs ends and pnh begins. It seems pnh has the possibility of a blood plasma transfusion? And that it appears a little different on EMG? I don't know - it is all so confusing. Did you go to Mayo again? Good for you, Matt.
 
I've heard of this as Isaac's syndrome...basically i think it's a more severe [if possible] version of BFS where the nerves are constantly firing causing twitching and cramping. It is believed to be linked to an autoimmune response, particularly to do with potassium channels. The link above gives some good information about it.Glad to hear you are alright!
 
RNS is generally when a neuromuscular junction disorder is suspected.The most important thing is that RNS has been proven to be of diagnostic utilitiy in patients with BFS, suggesting its origin is in excitability of peripheral nerve. I will post a link to an article as soon as I find it - I read it years ago.EDIT: Found it. For those interested in this topic:Accuracy of repetitive nerve stimulation for diagnosis of the cramp-fasciculation syndrome. Muscle Nerve. 2007 Jun;35(6):776-80.
 
Thanks for the insight Docen.I am only able to view the abstract. But, my question is, and for anyone of us who has been given or will be given a Repetitive Nerve Stimulation (RNS) test: Is a positive result good news? In other words, I am 100% confident in my diagnosis of BFS especially given my muscles are healthy and strong and no changes on EMG, etc. But does a positive RNS test provide more proof of a benign condition (given a clean EMG)? Or does it matter? Based on the limited material out there, it appears that the lack of clinical weakness and clean EMG alone are all one needs for a benign diagnosis but how does the positive RNS factor in?-Matt
 
Matt, I believe that it can be viewed as another supporting evidence that the cause is not MND as these findings are not expected with anterior horn diseases.
 
Matt,I'm glad to hear you are finding answers to why you twitch so much but I hate to hear how much stress it has caused on you. I've twitched for the last 17 months and your posts were one of the reasons I was able to overcome my anxiety over this fear of ALS. I just want to give you reassurance that your muscle twitching is nothing more than a benign condition for the solid reason you have twitched for 3.5 years. We all seen great doctors that reassure us that our twitching isn't the neuro nasty. I got a story to share for you that helped me when I talked to family and a doctor. My father is one of the most unhealthy men I know. The man has a multitude of health issues but the most that made me worried is he has a 24/7 and 365 days a year cough. I mean at times this cough would rattle walls it is so bad. Well he has seen so many doctors and some of the best doctors in the Midwest. Everyone was confident of a diagnosis of lung cancer or emphysema even though he doesn't smoke.......and their diagnosis NOTHING! They can't find any reason at all why the man coughs everyday. I'm sorry this has nothing to do with twitching but it goes to show you we all have things in our bodies that are out of the normal but it doesn't mean we are dying. I twitch everyday in my calves and legs. During the day I get pops throughout my body but it is one of those things anxiety has caused in my body. I've lived with health anxiety for 25 years and the stress it has caused on my body is manifested in twitching. Every doctor I've seen says your ok just anxious. Now there are days of doubt to where I feel the need to run to the ER but I find a way to fight through the compulsive ideas of going to the doctor. But after seeing so many of your post through the months I want you to know you have helped may many of us twitchers and I am 100% confident you are healthy like the rest of us. I look forward to seeing many years of your helpful posts and Youtube videos. Be well my friend.Dave
 
The docs at BU did the rns on me. they did it on my neck and it made my head jerk to the side repeatedly. i didn't get a dx of pnh after that exam, but was told benign condition.
 
Peripheral Nerve HyperexcitabilityNeuromyotonia is a type of peripheral nerve hyperexcitability. Peripheral Nerve Hyperexcitability is an umbrella diagnosis that includes (in order of severity of symptoms from least severe to most severe) Benign Fasciculation Syndrome, Cramp Fasciculation Syndrome, and Neuromyotonia. Some doctors will only give the diagnosis of Peripheral Nerve Hyperexcitability as the differences between the three are largely a matter of the severity of the symptoms and can be subjective. However, some objective EMG criteria have been established to help distinguish between the three.Moreover, the generic use of the term "Peripheral Nerve Hyperexcitability syndromes" to describe the aforementioned conditions is recommended and endorsed by several prominent researchers and practitioners in the field. (
 
Okay, so maybe now is a good time to talk about this paraneoplastic stuff. According to what Raindog just posted 25-35% of us should be found to have cancer - a lung cancer or thymus cancer, or more rarely, another kind of cancer. This is not the first study to imply this. However, this is obviously not so. If so, at least 1000 of us on this site would have cancer. I know of only one - a thyroid cancer of a doctor who does not believe she had a paraneoplastic condition in bfs. How can we explain this? I know this isn't fun to talk about since many of us have health anxiety. These studies are frightening - especially the ones saying it can take up to 4 years for the cancer to be found. I know Aaron does not like to talk about this, but we cannot deny these studies exist. I want to talk about how these do or do not pertain to us.
 
it sort of puts in in perspective...but.. in the study linked above, 1. cancer incidence was much higher than would be in the general population in the amount of time studied, specific types of cancer (lung and thymoma)2. we, as a group, seem to have a LOWER incidence of cancer than the general population3. how many of our neuros ruled out cancer? How many of us presenting older than age 40 have serial chest CT scheduled as suggested by the authors?I do not think my neuro checked into any of thisOther things that stand out to me in the study above is how rare this bfs crap is...and yet many of us on here have more severe symptoms, and some less severe than those in the study. In this study,in a neuromuscular clinic (actually two locations of a clinic), they had only 60 patients present with twitching and/or cramps in a period of 10 years! And this is ALL of those who presented in this way. That is only six per year! It also means that some of those who presented in the last year or a few may have developed cancer after the study ended. Two of these developed MND which would be consistent with the 6-7 % if not fewer. BFS is complex and not just simple twitching. it is all very interesting. disturbing to me, but interesting.
 
Raindog I think you're being sarcastic. Since you are past the 4-5 years it is easier to be so glib. I am not freaking out nervous about this, but it is in the back of my mind. And according to this study, rightly so. I find it just as interesting the very low incidence of cancer around here on this forum.
 
I know you have suffered a lot with this Raindog, and I know you are really very positive (which is why I don't understand the prevailing attitude about this topic on this board). I am sorry to hear of your recent findings and complications! But I don't understand why everyone glosses over the information in this and other studies. In light of your experience and length of time with all of this crap, this might seem like insignificant information. But did you read the study you posted? To me, being newer to this and my age, and with so many symptoms - not just twitching by any means - this is concerning. And I just might pester my neuro for these scans. However, I detest the radiation if the suspicion for these is really low like this board makes it seem...the disinterest in this topic, the seeming low suspicion by my and other neuros people here have seen, and the few who report any malignancy. This is why I think the discussion is valuable...the existence of these studies which indicate real risk, the cumulative experience we have with 100's of neurologists...I am sure you are very kind, and I am a nice person also. I am not trying to create any fear...just rational discussion of scholarly journal articles.
 
A simple superficial analysis of these statistics implies this is far greater than would be expected in the general population or would be found in another disorder such as diabetes or depression. For one thing, those two latter problems tend to have more unhealthy associated habits AND are common. PNH is rare - according to these studies. Plus, most of us on this site tend to be healthier than the general population... we tend to be overexercising athletes. If mine didn't present after a particularly stressful period of my life like the other majority of us (the other majority being after virus or vaccine) I'd be more worried about myself. Studies like this one do make you wonder though...unless you are 20, or past 4 years with this crap...that is what I've been saying...we have an extremely low incidence of cancer on this board...Why is this in such contradiction to the study you posted? What makes us different??
 
I think it would have been a more thorough study if we had details of all the patients and their lifestyle habits as it have told us more of the ones who had the tumours and any possible connections to their habits and diet. We must also remember that a paraneoplastic syndrome is a disease or symptom that is the consequence of cancer in the body...so on that basis i still stand by the fact that everyone here should still carry the same percentage as the general public and that each one of us is at far greater risk if we have habits that give us a far greater risk of developing cancer due to our past/ present lifestyle. I also agree that even people who live very healthy lives still get cancer but obviously the percentage call is far less than those who lead unhealthy lifestyles.If you are genuinely concerned then i would advise that you print off the study and make sure your GP or Specialist who is treating you do the appropriate tests that will help see what if anything is going on in respect to cancer.
 
and then there is this one that sort of flies in the face of it. out of 37 subjects NONE had malignancy, but 12 had benign tumors. What the heck - I can't make heads or tails of this. Anyone?
 
Juan, That's the thing - this info is EASILY available, I came across it within the first few weeks of bfs but there's two or three strange things about it. This isn't new info to me, just thinking about it more and then Raindog posted that link, but for other reasons than what I found to be a major, MAJOR finding. The study he posted also deserves some discussion about the rarity of this bfs condition. Strange things:1. No one ever talks about it around here - for a bunch of health phobics (present company included) I find that a little odd2. No one's turned up with a malignant or benign tumor (HOORAY!!!!) - so we as a group don't match the two studies linked above. We have a lot of valuable information here over the years, researchers could find in us a treasure trove!3. Neuros are not testing for these things as standard practice - it seems only at large clinics such as Mayo and Cleveland.I'm no expert, but I wasn't born yesterday either. It seems these things are worthy of much more discussion than they get. btw Raindog, I read a different comment you made about this study years ago and agree - it was most likely the lifestyle that caused the cancer, not the bfs that caused the cancer (although I think I remember that only 3 of the 5 or 6 in this study were smokers). Regardless -- bfs, according to at least that study, can be a harbinger/omen. And it isn't just lung cancers from other things I've read (simple wikipedia I think) but also breast, prostate, etc which are not as linked with lifestyle. Plus, 20% of lung cancers in females are not related to smoking.
 

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