Traveling Rocky BFS Road: MND/ALS

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simonw00

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Well I should know better really, shouldn't I?! I have travelled the rocky BFS road for 13 months now and have yet to develop much that would point to MND/ ALS! I have been told three times by my neurologist that she is 99% sure I don't have this dreaded condition (despite the odd brisk reflex on examination here and there, the odd scary terminology of 'denervation/ renervation' in one EMG report and some recently discovered quads asymmetry corresponding to the EMG findings - I trust that the neurologist's reassurance that this is probably just a slipped disc is accurate!) I have watched my calves and feet twitch day in day out for over a year and still I can walk a mile up the steep track near my work. I now ignore these twitches.So why oh why I am I so spooked by my L thumb twitch? I have gone to YouTube and typed in 'thumb twitch' and watched a couple of people's recordings of their thumbs twitching - mine looks no different. I have typed in 'thumb' in the search function on this site and found 141 pages of posts about thumbs, many of which recount reassuring anecdotes which sound similar to my own experiences.Despite all of the above, whenever I see my L thumb twitch I start feeling sure that this is the beginning of the end. So it would be really good if anyone who is currently active on the site and who has symptoms similar to my own (see below) could make themselves known and help reassure me!6 week history of daily twitch in L (non dominant) thenar muslce - between the palm and the thumb, present for about 50% of the waking day and occasionally forceful enough to wake me from sleep. Often associated with a visible but small movement/ flick of the thumb. Associated with some crampy pain from time to time. I can't work out why I should be so wound up about this particular symptom - maybe because it is new, because it hasn't settled down like other 'hotspots' have in the past, maybe because it is so difficult to ignore, being in my line of vision all the time... not sure. Anyway, any support would be grateully received.Thanks in advanceKind regardsSimon
 
I have been twitching 24/7 for almost 3 years (in January). My feet and calves go crazy 24/7. I also have the thumb twitch. Mine has been really bad for a couple of weeks. I also twitch a lot in the muscle on the outer pinky area of my hand. I think it is pretty common with BSF. My newest hot spot(past 2 days) is the middle of my chin. It is driving me crazy. My twitching has been very bad for several weeks. I swear I don't have any break of twitching--there is someplace twitching 24/7 not including my feet and calves that are always going. My twitching is much worse now then when it started. You just have to remember that we have been twitching to long for it to be anything other than BSF. I know that with as much twitching as I do if it was ALS I would not be walking or functioning by now. This is just the nature of BSF--no worries for you!!!!!
 
Funny you should mention the old thumb twitch today. I spent way too much time examinining my twitching L thumb under bright florescent light today. It was scary to look at because it twitched like crazy, especially when flexed. I have to keep reminding myself that it has been doing this for months now and nothing bad has come of it. It feels crampy today too, but that could be the obsessive strength testing. You are not alone. I am just as crazy as you and neither of us has ALS.Cheers!Becky
 
Si, I get exactly the same mate, only mine does not twitch in the fleshy part of the hand. (up to now). My Left thumb twitches and actually moves back and forth, not by much granted but very noticeable. Also my index finger does this but not as much as my thumb and have a slight trmor in my left hand. My mantra has become no strength loss no problem!! It should be yours too. Pretty much over the *** route now, its been a while, just got EMG test next monday and that will be it!! For good!! My nuero told me its unlikely to be *** from her clinical exam and she was pretty sure I had some issues in my C_spine, she says EMG will confirm this.It did not stop me worrying though for a good while. Since then I've talked to people with *** and BFS and they have told me a nuero can tell a patient with *** as soon as they walk in the room!!!So try to relax a bit!! Off to kick some ass on the rugby field now :D) Take careRyan
 
Sorry to sound so blase about it, dont get me wrong still have my moments when i get strange shooting pains in ankle, wrist etc, but thankfully thet are fewer and far between.Hope this has helped and look forward to speaking with you again.PS whats the teaching situation in NZ? would love to emigrate there!Regards Ryan
 
I get the thumb twitch also. Simon, I was just to the neurologist yesterday. He told me that after 6 months of twitching I would be having major problems by now. You have been twitching for over a year. You are just fine. ~Leslie
 
This is nothing to worry about. When I started twitching I had a major twitch in my left thenar muscle - I was very worried too. It eventually stopped and, of course, 4.5 years have passed and nothing happened except that the twitching never stopped....you will be fine. After 13 months of twitching you can be sure that your condition is benign. Once my stomach twitched in the same spot for like 3 months - was ridiculous. Anything can happen with bfs...
 
I get them Simon maybe 300+ a day mainly right thumb thenar eminence, could it be the mouse use on the computer? I also get 2x as many in my right leg than left perhaps right is my dominant side ? Who knows but 5 years on nearly i;m still strong and typing this no problems whatsoever.Take care ;)
 
A thump twitch? A THUMP twitch? OMG. Its over. Im sorry. It could have been anywhere else. But a Thump Twitch.... All sources say the same... If it is in the thump... Nah.. You are fine... :LOL:
 
Hi Simon, my twitching started in that muscle between pointer and thumb. It is no difference if your hot spot is in the claf, the tongue or the hand. A hot spot is a hot spot and the only difference is. You look very minute on your hand, as you use it the whole day. That is why your mind thinks it is more serious, as you see it every minute and it is more difficult to ignore. You have been checked out by a lot of high skilled docs and you know a lot of studies especially mayo clinic show that the latest onset of from twitching to *** was 11 months. So you are over the humb. I would better enjoy new zealand, as your environement is the beautifulest in the world. Enjoy your live, it will be a long one. Cheers Race
 

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