RawlsKelley
New member
Hey all,My name's Shaun. I'm 33 from northwestern PA (where it's supposed to get down to -10 tonight; Brr!). I wanted to share my experience with you as well as my anxieties/fears, and I certainly appreciated any comments/feedback/support as well. This whole thing started back in October. I want to say mid-October, as I know it was a while before Halloween, but right now I'm using Halloween as my certainty date as I honestly can't remember for sure. I was standing, cooking dinner, and all of a sudden upper knee/thigh began to twitch noticeably and distractingly. They were quite strong twitches, but I figured I worked out too much (as I use an incline trainer and had been working out quite heavily for 6 months or so). Then I decided to search Google, and like many of you after reading some information, had sudden extreme fears and panic attacks about ALS and other motor neuron disease possibilities (as I've seen similar before, and like I'm sure is the case for a lot of you, it's one of my worst fears). As the days progressed, the twitching seemed to come and go. I also tied it to some strange feelings I was having. I still can't put a word to it, but I sometimes felt...foggy. I could think/reason/etc. just fine, but something seemed (still does sometimes) different. Also, my hands feel a little different...almost like micro-twitches, and this was actually something I had noticed before the leg twitch, but couldn't really attribute to anything, and it didn't concern me too much at the time.I'm somewhat OCD, and it took me a few weeks to get a grip on my anxiety. Some articles helped that indicated if there was no weakness, and if moving the muscle caused the twitching to stop, it was unlikely to be ALS, and that brought me comfort.Since my initial symptoms, I've had periods of less twitching and more twitching. For a while it seemed like it went away completely (or very close to it). I've had twitches in both knees/thighs, both calves, both hands and possibly fingers, my shoulders, my chest, and possibly my right eye (I also have dry eye which can cause a similar sensation, so I'm not 100% certain, but it feels like a twitch to me.) The most prevalent is definitely my knee/upper thighs. This whole thing led to other obsessions/anxieties, including finding out my blood pressure was a bit high (still prehypertension, but higher than I'd like) and obsessing over that for a while. Through some supplement changes (eliminating stimulants; adding garlic and cayenne), I've improved that, I'm eating pretty well (not a saint but I do try), and I'm exercising regularly.So the good news is, my lifestyle in general is probably healthier because of this now, and I'm using it as an opportunity to work on addressing my fears and increasing my understanding/empathy for other people who have anxieties, whether it's in regard to health issues or something altogether unrelated. It's also useful in combatting my OCD tendencies in general and working on patience. This is not a fun place to be, but at least I can learn from it moving forward.In the last few days, my twitching seems to be a bit worse again, and it's been accompanied by some sensations I didn't feel before (including a small amount of numbness/tingling and what I can only describe as an occasional ghost tickle moving through my legs, etc.). This, along with finding a few anecdotal stories of "twitching was first" or "do an EMG test after a year" scared me about ALS all over again, so I'm working to get a grip once again (and doing better this time than the first time, though I'm still pretty anxious).I guess another fear I've had is that I've done something to prompt this. I've used supplements for several years, including amino acids (though not branched chain ones...mostly arginine in my case), and while I've cut out the majority of those, it's been a worry. I also had therapy for a neck issue last year where they used TENS electrostimulation on me (and I've used it in the past on lower body areas), and that got me a bit scared too, even though any link between ALS and electricity is still sketchy. Another possibility (and this applies to BFS as well) is that overdoing the exercise prompted the condition, as when I first started exercising, as I sometimes do, I overdid it and was going pretty hard 7 days a week (for 6 months or so, with I think only 3 missed days total, and those I was very sick). I found information about overtraining and the possibility of overexciting the central nervous system, and I really think I did manage to do that, which may have prompted this. I took two weeks completely off around Christmas, and now that I'm back into it, I'm exercising 4-5 days a week, never 7 and always at least 2 rest days a week. Additionally, I worry that if I did somehow overexcite my nervous system (via any of the above), I might somehow trigger ALS, but I keep trying to reassure myself BFS is not related and it's more than just overexcitement of the CNS that makes things like ALS do what they do. I also had tried a supplement (slightly different variations) twice to calm my nerves (and hopefully counter any CNS overstimulation), as I was afraid that might have been the cause, but the supplements (both containing theanine) seemed to make the twitching worse, so I discontinued it. I'm still struggling with my fears of something more serious like ALS or another MND, but here are the good signs from everything I've read:- My age of 33 and my ethnicity [father was from India] are slightly favorable as far as odds.- It's approaching 4 months and still no weakness...it's incredibly rare (if even possible; I've read contradictory things) for twitching to be the first symptom, and no weakness for 3+ months would be a good sign I think.- Fascilations are widespread, and while my one leg seems to do it the most (BFS hot spot?), I think the fact I get some on both sides of the body and completely different areas is in my favor.- If indeed my eye is twitching, that would be rare for something more serious like ALS as it usually doesn't affect muscles around the eye.- Sensation doesn't usually accompany ALS twitching, which wouldn't explain the numbness/tingling or ghost tickle I feel.- If a muscle is twitching and I move it (or touch it), the twitching goes away while I'm moving it at least until that muscle is rested again. (This includes entire bouts of exercising.)- Finally, if it is BFS, or was prompted by an overexcited central nervous system, this does NOT lead to ALS or motor neuron disease and my statistics are no greater for getting it later in life. Hopefully I'm correct in all of the above, and any corrections are welcome. I also am talking to my doctor about this and have another appointment the 19th. (Around the time this originally happened, I lost my doctor [who I liked and trusted] and it took me a while to find a new one [who I like but is still very unknown to me], which was another cause of anxiety). My last appointment, the twitching was largely subsided and I was more concerned about blood pressure, but I'll definitely talk to her more in depth this time.Thanks all for listening and any feedback!