Fasciculation: 10 Months On

Hi allI have had fasciculation for 10 months now, being widespread but focused in calves. As some of you know, I had a normal EMG early on and also two normal neurological examinations, so I have no right to worry! I have been predisposed to muscle pain and cramp throughout this ordeal, but only mildly so on the whole, and what muscle pain/ cramp I have experienced has tended to be the result of self-inflicted and pointless self-testing, which I no longer do on the whole. So i have been a bit disconcerted this week when I developed severe and debilitating cramp in both calves (outer aspects, tibialis anterior to be precise - the muscle that one associates with MND/ ALS as it is one of the first muscles in the lower leg to weaken in ALS, resulting in foot drop). This seems to have been unprovoked by anything in particular, e.g. change in exercise patterns. I notice that a good number of my friends and colleagues on this site suffer from both fasciculation and cramps BUT please could you tell me whether both these symptoms came on at once, or whether there are others out there who developed cramp later on in the course of their illness.At the back of my mind, I have this fear that fasciculation in a muscle that is characteristically affected by ALS, which has now progressed to severe cramp in this muscle is just one step away from developing weakness and obvious ALS. I have read of such cases in the medical journals but these are obviously rare - the fact that they have been published in Neurology journals as case reports means that it is a phenomenon that is sufficiently uncommon to warrant publication.Thanks for any support you guys can give.Kind regardsSimon

Simon,I just wanted to add that in my research of immune-mediated neuropathies and peripheral neuropathy (both inherited and idiopathic) I ran across patients with these dx with foot drop. So footdrop is not an ALS-specific symptom. I don't know if this helps but I thought I would share it. I know you haven't developed footdrop yet but if you did even that does not mean the worst. Many of these other conditions that cause it were treatable and the patients improved.Krackersones

Hi Simon,How is New Zealand and your practice going these days? Well Simon, try to take it easy, as an oldtimer I can assure you that the cramps are nothing but that cramps, some of our fellow board members,as you accurately stated on your post, have them; I havent experienced them but I've felt other troublesome symptom: pain. Remeber Simon: BFS almost always morphes and changes, waxes and wanes, migrates everywhere, but its just the nature of BFS, nothing else.When some new symptom shows up or something "new" happens we BFSers tend to fill our minds with wrong assumptions or conclusions; precisely, on those rough spots is when we need to be rock solid logical about what's really going on, take in mind your clean EMG + your ok clinicals exams and reassure yourself that nothing sinister is ahead of you.BFS my friend, its like those beautiful and shy chicks, it takes some time to really know them, but once you get to that point everything gets really goooooooood!Hang in there tough, you'll get better,Adiós,Eduardo

Simon- mine started with twitching and then two weeks in I got this progressive tightness, cramping, then spasming of the calf muscles (worse on the left). It spread up the back of my legs to the hamstrings and I was unable to do much of anything for two weeks. It slowly abated with residual tightness and irritation in those calves for several more weeks. I then had month or so of just widespread twitching before I had a second (more mild) attack/flare up of the cramp/spasms in the calves. It was bad enough to send me back to the neuro who was as unimpressed as he was the first time. That too passed and I've been able to run, play football (socccer), play basketball, etc. I think the cramps without any real weakness or strength loss are pretty unremarkable, especially if they come and go.

Had this for almost four years now and didn't have cramps at all until this year. Had horrible cramping on my right shin muscle (have no idea what the "real" term for that muscle is!) and lately in the arches of my feet. I always feel like with BFS I'm waiting for things to move and change, because that reassures me that it's just BFS.

Hi Simon cramping came later for me. I get most of my cramps in the gastroceniemus and more like a spasm knotting sensation down the outer peroneus longus but both intermittent ...its been doing it well over 2 years no foot drop or no weakness ive noticed as i did a full day on the bowling green yesterday.I never had an emg to start when this condition began 3.5 years ago and only just had one done 4 weeks ago so i cant say if, when this condition started the emg was clean or not.ATB

Hi Simon - I did get some buzzing, tremors, etc before the cramping & spasms started. At the time I didn't think anything about it though. The cramping did start in the calves and thighs but did not stay in a specific muscle or group but spread. If you are lucky they will not spread and stay in your calves where at least you can get to them with your hands, apply heat, and massage insertion points. Gradually, for me, things got much worse and the symptoms kind of merged into a consistent, painful, all-over phenomena before they improved. I'm rather amazed that you continue to scare yourself this way, looking for the worse case scenario, etc. If you read enough neurology journals you will find all your symptoms and can imagine the worse in a myriad of ways. Just think of what you would tell a patient who came to you with this type of 'evidence'. I just had a long talk with my neuro last night (he always does his call backs after 9pm!) about my symptoms, supplements, etc. We are at a stasis as long as I have no further developments (that are debilitating or further constrict my life/activity). We decided that any further investigations would at most provide assurance of a myopathy that is probably borderline and I should plug on as I have been. I asked him about protecting my long term health and he did tell me (since my muscles are definitely affected) to start seeing a cardiologist regularly to make sure that my heart is not being affected and I'm not developing any arrhythmia etc. Anyone else with cramping & hypertonus been given this advice? It's more along the line of a safety precaution rather than an edict but I will probably follow through on this.

dear simoni have had fascics in the tibialis anteriour too. they are really scary as they are often mentionned in als-onset. but i think that bfs can make you twitch in any specific muscle you have. i guess there are many that were twitching there at a time. my cramps have disappeared for a while now, i always have them associated with periods of severe fasciculations.

Cramping began secondary to widespread fasciculations...I had pain radiating about 2 months after my fascics...it was in the sciatic distribution...from low back through hams to the knees and sometimes in the foot. I have had this odd pain under my first metatarsal as well for a few months now...but no atrophy or weakness associated with the pains...atleast none that I can notice. RegardsRaj.

Simon- you jinxed me. Had a flare up of the calf cramping tonight after baseball. Felt the left one (where the twitching started and was most severe) start to feel achy and tight mid-way through the game. Now its very sore and crampy. Its weird too because it happens at a time when I've had a flare up of the twitching, especially the face and nose. Absolutely bizzare condition it is.

Hi,It is funny that you have suddenly gotten this as I had never had bad cramping before either before this week. Although I have random twitches all over, my arms/hands/ribs and then face are the worse. Due to my right hand feeling so weak and still worry about my speech i did not even worry about my occassional leg twitch until last week. I woke up with a cramp in my leg (back of the calf on the inside of my left leg) and then it went away, then I developed a cramp there again that is basically constant (even though only noticeable in terms of pain when I first walk). Also have had the odd twitch in this tight muscle.I was thinking about posting here but you beat me to it. As I have had twitches since Sept 08 I think that it shows that cramps can come much later.I am sure that you are okay.Take Care.Rachel

My cramp started 10 months prior to my twitching