Seeking Advice: Twitching Calf & Weak Toes

Hello......I'm looking for some advice if anyone has seen a similar case as this over the years.I’ve had 24/7 twitching in my left calf for the past 9 months and it’s atrophied significantly over that time plus my left toes will only raise 10deg off the ground. The toes push down with strength but when raised they are incredibly weak (eg if I wiggle my toes on my right foot with shoes on the shoe moves noticeably however on the left it barely quivers). While my left calf is much slimmer that my right I can still walk/run without any problems. Although my running speed has gradually slowed down over the past few years so the strength is probably being minimally effected (I run and swim a few times a week). It is starting to look ridiculous though…….a bit like I have 2 different peoples legs attached to my body, 1 an adult male the other a teenager. And the twitching never ever stops. It goes rampant after exercise 100 twitches per min……..when I do not exercise for a day I get around 50 per minute visible in the left calf. All day everyday for 9 months.My diagnosis after 2 EMG’s, brain MRI, spine MRI plus bloodwork at 2 different neuro’s in Tokyo in June and July plus a visit to the orthopedist in October. They say I have possible spinal stenosis or hernia. Apparently my spine is quite a mess even though I feel no pain. This was all shown up on my spine MRI. Apparently this explains why the left calf has atrophied gradually and the left toes are weak as it correlated with the stenosis in the spine.They said there is no evidence of any motor neuron disease from the EMG’s although they did say the tests were not normal as they detected nerve damage in both my left leg and left arm.I’m looking for someone though who has knowledge of similar cases. Obviously what I’m concerned about is if the left calf keeps atrophying to the point that it will impact my lifestyle. The orthopedist did say that for people with my condition it’s possible to see foot drop due to the spinal stenosis which may gradually occur over time. Also the only cure apparently is surgery which he wasn’t promoting as I have no pain and no movement restriction yet. He did recommend to keep active so that the muscle doesn’t completely waste away (I have been though and it’s wasting away).Does any of this sound plausible as a diagnosis though to any of the vets on here? I think it probably does but the constant muscle twitching isn’t really a normal symptom of spinal stenosis. The neuro thinks I may have a double whammy of BFS and spinal stenosis while the orthopedist said your calf twitches because the muscle is so small and it’s stressed (which I don’t really believe as it just goes all day and night non stop).Some other background on my condition.• It’s likely that I had a skinny left calf and weak toes before the twitching but I never really noticed it. It has definitely atrophied more though in the past 9 months when the twitching started.• Interestingly the actual first time I ever twitched was in my left pec muscle after a routine 2km swim in Feb 2013. The twitch stayed for 48 hours which at the time I thought was kind of cool. However when it stopped the calf twitching kicked in, and has never left…….I also randomly have had twitches in my face/arms upper left leg/abdomen/back since that day back in Feb but these would always appear only for half a day or so once every month. All this twitching stuff interestingly kicked in 1 week after influenza + cold sore and a course of tamiflu. I did have some very odd breathing/sensitivity issues back in Feb/March yet these seemed common for people with BFS.• So the theory seems to be I have spinal stenosis and BFS. However that doesn’t really explain why the left calf has atrophied gradually over a 9 month period as soon as the twitching started. Interestingly the toe weakness has remained the same.Anyone seen/heard of anything similar? Also if you have knowledge on this......am I right in assuming that I just keep active and healthy and hope that the calf doesn’t gradually waste away to the point that I need assistance or an operation. Seems a bit of a waiting game really.Regards

HI,first of all i can say that we have here at least one fellow with the more skinny hand than other but stoll operating it (and he discovered that he had it maybe forever and did not get any aatention to in before BFS).We have also several members with clear spinal stenosis.Most of us are not neurologists (we have several doctors of other branches, nurses and medical students here), but looking from what you say about your spine, it is quite possible that you have some denervation in the leg not reaching level of paralysis. It is also well known for doctors already (after wide implementation of MRI) that degree of hernias and pain do not correlate - you may have huge disk bulge and no pain at all, so it is well inline with your condition too.MND most of us are in fear of includes not only spinal, but also central brain motor one damge, obviously your EMG excluded that fact so looks very plausible that you have only stenosis.BFS seldom can be limited to one place in the body, and it is random with hotspots (preferrable places), and usually BFS is not assoicated with any slightest neurological deficite, but you do have certain (however slight), so for me (I'm not a doctor however) it look like your main trouble is stenosis. For me your orthopedist advice looks good - keep running and swimming and see what wold be going on (spinal surgery should realy be a last resort, in case of significant loss of function or unbearable pain, becasue it is a serious intervention).With best wishes,Yulia

Thanks for the reply YuliaYes the stenosis (and I have had disc hernia in the past) would explain the atrophied calf and weak left toes. Certainly when all the twitching kicked off in Feb 2013 and I actually started looking at my calf and toes for the first time and that is when I noticed the weakness in the toes and small muscle size of the calf. 9 months on from that the toes still have the same level of weakness (I can't raise them off the ground, pushing down though is still fine)) and the calf muscle has become smaller (yet functions fine) however it had probably spent at least a year or more shrinking before I first noticed it.I guess what is confusing me though is the twitching. While it has settled into that weak left calf it's also been everywhere else on the left side of my body in the past 9 months albeit only for short periods of time (a few hours to a few days per body part apart for the calf where it never stops). And my early months of Feb/March were full of classic BFS symptoms such as strong pulse, periods of unusual tiredness, heightened body wide twitching. I don't think/hope stenosis back then would cause the random twitches in my face, fingers, stomach, etc, etc.So if someone does have stenosis and BFS would it seem likely that BFS twitching could settle into the spots were denervation previously existed in the body. Or could stenosis cause nerve damage beyond a certain limb which would explain why random twitching sometimes occurs?I guess that's more of a question for the people with stenosis. As good as the neuro's and orthopedic have been that were diagnosing me I just found their explanation of twitching by a spinal stenosis patient to be vague and incomplete. Obviously what I'm hoping not to hear is that stenosis could damage nerves and muscles so badly that they would weaken and malnourish and this is signified by twitching. I’d rather hope that benign twitching is something that could easily settle into weakened nerves of someone who had stenosis.Cheers

Hi Cobber,couldn't it just be that the twitching in your calf is really caused by the stenosis, while your bodywide twitching set off due to the stress and anxiety you have experienced by noticing atrophy and weakness in that calf? Sometimes our mind plays really dirty tricks with us.

my spine is a mess also....which discs are hernitaed? what does your mri of your spine say?

Hi AZThe MRI showed narrowing of the spinal canal of the L5, S1 region. Apparently that accounts for the toe weakness and atrophied calf on the left side (stenosis basically). Which makes sense really. I have little to no pain though, however as Yulia pointed out (and the doc) pain does not always accompany the problem. Although lack of pain is rare as clearly my situation is an advanced case of stenosis if it is causing atrophy of the calf (atrophy in general is an advanced symptom).Keen to hear from any others on the forum still who have stenosis and long term hot spot twitching. Although I acknowledge that everyone's case is likely to differ. I'm now going 9 months in that calf non stop which is quite disconcerting when matched with atrophy. I'm happy with the doc and neuro diagnosis though obviously as it makes sense that stenosis is the cause of the atrophy and toe weakness. Yet with conflicting opinions on the reason for the twitching it does concern me somewhat.Cheers

Hi,it is definitely positive that you have certain diagnosis (which many of us lack here) and therefore treatment options are more clear. I am not a specialist, but as far as I understand the nature of twitching, it could be of two reasons - either localised at muscle level (due to irritable memebranes) or at the level os spinal neurons (in the anterior horns of the spine), if they are somehow damaged and make a 'sparkling gap' in the signal transmission.9 months of hotspot at present stenosis might suggest that your anterior horns might be really irritated due to that fact causing you twitches.you may PM our fellow neuropathologist TwitchyMD and he can explain you all issues much more detailed and in a proper way.and we definitely have one fellow with syringomyelia (slot in the spinal channel after trauma) and several with stenosis and even surgery. You ccan for sure find them by searching related keywords. Their symptomes also were initially different form typical BFS - more profound, etc.hope they can give you more practical experience,my best regardsYulia

My personal take is that whatever BFS is .... agitates our existing inflammations.And from that, come our symptoms.If we have spinal damage which surrounds major nerve endings, BFS will agitate that and you'll experience "X" symptoms as if you'd have full blown nerve damage in that area.If we have gut issues due to years of eating poorly and we're dealing with gut inflammation, BFS will quadruple that and you'll end up with gut-induced symptoms which diet changes can drastically help.If you deal with anxiety on low levels, BFS will kick your thresshold to anxiety into overdrive, resulting in all the traditional stress-induced symptoms.Whatever BFS is ... it *seems* to play on our existing imperfections, and inflame them, resulting on symptoms. I chose to address my symptoms as if they were each disease they mimicked, even though I had no such diseases. In the areas where I was dealing with nerve damage symptoms, I began supplementing for nerve health, and exercising for the same purpose. Where I had muscle pain and inflammation, I learned that working out those muscles lightly on a regular basis helped immensely.Same with joint pain and tendon inflammation (which got severe at times), careful, mild, full body movement and resistance training.Neuropathy in foot and locked up calf muscle - treadmill walking, reduced my iron levels, and dietary changes helped this almost instantly.Where I had gut induced symptoms, my dietary changes were the holy grail to recovery.Where I had generalized anxiety, I tried my best to go entire days without a single episode of emotional/mental stress. Then repeat.Where I had generalized inflammation maybe in my spine due to degenerative disk disease (as per MRI) ... I just did anything I could to reduce inflammation systemically. Quercetin, Dead sea salt baths (due to the bromine- anti inflammatory), chamomile tea (shown to be anti inflammatory), Lavender (also a Central nervous system anti inflammatory), probiotics (reduce gut inflammation), avoided all breads and pastas and caffeine's (gut calming) ... even drinking a glass of Tart Cherry Juice, shown to be a CNS calming tool.My lifestyle from top to bottom looks nothing like it did pre-BFS. But now I am post-BFS.