jeffthefuture
Member
Hi everyone, I just thought I’d send everyone a ‘positive’ update. Just to provide some context, I’m a 31 year old male and well into my 3rd year of BFS. I am also nearly done my training as a family physician, so obviously have quite a bit of medical perspective. Lots has already been said on this board, and we all know the terrible complications of this miserable syndrome (crippling anxiety, somatization [ability to manifest real clinic symptoms through the mind-body interaction], catastrophizing, “I’m the exception” or “how long” example, etc…). As such, I’ll try to keep my post relatively short, but hopefully some of this will help a few of you. 1. ALS is terrible, but rare, disease. It is not subtle. Fasciculation’s are the least noticeable features of the disease for someone with ALS. The classic patient is someone in their 60’s or 70’s, who for the past couple of months, has fallen multiple times secondary to unexplained ‘foot drop,’ and who can now no longer write with a pen. There is no ‘subjective’ weakness in ALS – it is progressive, unrelenting (e.g., does not wax and wayne), and accompanied by a myriad of symptoms that make cramping/fasiculations the least of a patient’s chief complaint. 2. From a doctor’s perspective, we hardly ever think about ALS, because honestly, it is so rare. I have now seen easily 10 patients in my career who I have thought about the possibility of MND/ALS simply because of their overt symptoms (age (70+), and my own experience). In all cases, eyes have been rolled by my preceptors (simply because it is virtually never encountered in clinical practice) and sure enough, investigations have always led to very different diagnoses. Simply put: muscle cramping, weakness, atrophy, fasiculations, reflex changes, etc…etc…have so many OTHER explanations than ALS/MND, that it is still rarely thought of by doctors. Honestly, the ‘ice bucket’ challenge brought more to my colleagues awareness of ALS than all of medical school combined (and I went to a very good medical school btw, lol) 3. Virtually NO PHYSICIAN (including MANY neurologists) know anything about Benign Fasciculation Syndrome (or the devastating effect it has on sufferers). Really, this condition needs to be studied much more thoroughly and addressed in PSYCHIATRY (rather than neurology) because of its truly life-altering consequences (personally, I STILL suffer from crippling anxiety. Unfortunately, once you get ‘over’ BFS, you just find a new health issue to perseverate on). As such, don’t necessarily count on your family physician or neurologist to even know about BFS. Even worst (especially in the USA or Canada), you can expect your physician to perhaps employ the “watch and wait” or the “can’t be 100% positive” approach, simply because medico-legal consequences of a “wrong diagnosis” are so engrained into our basic training. Take this in stride, and recognize that BFS is a “real” entity (trust me, I’m all about ‘evidence based medicine’). Honestly, we don’t know much about the syndrome other than that it is physiologically benign (psychologically however is a complete different story). 4. My simple advice for NEW fasiculators/twitchers:A) This condition many very well never go away. It sucks, but you will learn to deal with it. You may twitch all over, without rhyme or reason (one “hot spot” for months to years, or random twitching all over). You may cramp, you may get fatigued, you may “feel” weak, you may find dents or differences in muscle sizes (you may even atrophy!), or you may get a wide range of other ‘weird’ syndromes. When symptoms get worst, talk to your family doctor, but don’t go seeking a diagnosis of ALS. I can’t even begin to tell you the number of different, COMMON, conditions that can cause progression of neurological symptoms (everything from spinal stenosis to myasthenia gravis!). In my opinion though, new potential BFS sufferers should ask their family physician for the following before going any further:CBC, electrolytes (including Mg, Ca, PO4), TSH, B12, Folate, Cr, ALT, cholesterol (good to know anyway) +/- TTG/IgA (celiac disease) ONLY. If all clear, stop investigating and start ‘dealing’ with this annoying (but not pathological) disorder. B) DO NOT, I repeat, DO NOT, get an EMG or MRI, without true neurological weakness. If a neurologist looks hard enough, they WILL find something wrong with everyone (7/10 of us can apparently show at least one fasiculation on EMG if tested for 30+ minutes). I for one, had a completely normal EMG, except for a few fasciculation’s, and a SHARP wave in my gastrocnemius. What a wonderful 9 months of worrying that resulted in (despite repeated assurances from 2 incredibly competent neurologist that all way good). Sharp waves/fibrillations sound very serious, but again, have multiple explanations (in my case, likely from over exercising, but lots of other possibilities, including foramen narrowing, stenosis, etc…). C) You are not alone. I spoke to an EMG technician a few weeks ago (this person had no idea about my own history) while on a movement disorder rotation, and he was actually joking about the number of PHYSICIANS he would literally see monthly with “new muscle twitching” who were terrified they may have MND. From the technician’s perspective, this was quite amusing (although not to me, as I had been one of those individuals in the past). Physicians are sort of hypocrites – we love to reassure, but when WE start to develop symptoms, you better believe we want answers ASAP (lol). D) STAY OFF GOGGLE AND SCHOLARILY JOURNALS. As a training physician, I literally have access to every medical journal and article out there (way beyond google scholar). I’ve had a look ‘out there’ at any potential ‘scary publication’ and truthfully, I’m not impressed. There are only a few (e.g., 4—7) true CASE REPORTS of what we all fear in the entire literature (from the 1990’s onwards), and frankly, with these sort of numbers, you really have to start taking into account probability and statistics (e.g., even though ALS has an incidence, of let’s say, 1-2/100,000, given the number of individuals who develop benign fasciculation syndrome yearly [let’s guess, 150/100,000?] => unfortunately, a very small number of those may also develop statistically spontaneous ALS). In other words, correlation, simply does not mean causation (and I have seen nothing in the literature over the past 15 years to suggest otherwise). Again, I don't want to mince words for those who don't have a strong background in statistics. All I'm trying to say is that, unfortunately, based on RANDOM chance alone, some individuals may approach their physician first with a complaint of weird fasiculations a few months (or years) before they are diagnosed with ALS. This does NOT however mean that the fasiculations were precursors to ALS (in fact, quite the opposite of what we know about MND) but rather, secondary to random chance alone. I'm sure, for instance, if we looked hard enough, we could easily find 4-7 ALS patients who had pneumonia 6 months prior to their ALS diagnosis. This does NOT mean that their pneumonia caused (or was a precursor) to their ALS. All of you need to start looking at your fasiculations the same way. I guarantee you I could produce a study showing that 50% of all ALS patients has a viral cold 12 months before their diagnosis. Are you going to worry next time you get a cold? Why would your fasiculations be any different? Simply, fasiculations +/- cramping do NOT statistically (even remotely) equal ALS. In summary, please:-Recognize BFS for what it is – a pathologically unknown, ‘mind-body’ interaction with a HUGE myriad a CHANGING symptoms - the most severe of which is psychological (and truthfully, can be VERY severe). -Don’t expect physicians to know much about BFS. It is considered a ‘functional’ disorder, and we spend most of our training learning about ‘organic’ disorders (simply because there is so much to know). Doesn’t mean it isn’t ‘real’ or affects many lives (e.g., just ask someone with severe IBS, fibromyalgia, or migraine associated vertigo).-If you have BFS +/- cramps +/- the changing, million+one symptoms that go with it – I’m sorry, this sucks (trust me). There is no cure at present time and you may have this for many years to come (even if your ‘anxiety’ gets under control). You may unfortunately need anti-depressants or a benzodiapiene (as needed) to cope + therapy. This disorder can be like a wave, and if you are not careful, it is going to result in other, perhaps more serious, mental health problems. But, take this doctor’s advice – ALS is not subtle. If you are twitching/cramping right now + whatever else weird/persistent symptom you have (but can still walk and hold a cup of coffee), this is NOT MND. You have either BFS, or some other condition that may (or may not) be worth investigation…(e.g., from B12 deficiency to spinal stenosis).
TH, ACHR, GACHR, RNA, VGKC(LE), VGCC, ANTI-MUSKRegards