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Question - BFS 24/7 Twitching

PostPosted: January 4th, 2015, 11:28 am
by Jenna
I have read a couple posts where it was stated that most people on this forum twitch 24/7. I know many of us come here from fear of MND's (as I did).

I do not twitch 24/7 but do twitch all over (legs, arms, feet, lip, buttocks, etc). My twitching is sporadic through the day and not anywhere near 24/7. I posted before that symptoms started with burning (like a sunburn) on my skin with no evidence of any rash or anything on my skin that would cause the burning. Started in September. After starting a very low dose Zoloft on Thanksgiving day, I started noticing twitching two weeks later. Yes, I know this could be from the Zoloft. I was not concerned about MND related to the burning because I know it's a sensory symptom until I started twitching (although I did have a scare in 2011 that did not start with twitching).

Anyways, above was just giving some history. So, the question is, if many people on here do in fact twitch 24/7, should I be more concerned about a MND because I do not twitch all day? I notice twitching more at rest (like many on here) but I may twitch lets say 20-30 times a day while at rest (that I'm aware of) and have no idea how much while sleeping but I have been woken up by some random twitching at night as well. I think waking up at night is because of anxiety and worrying about twitching.

Thanks for any insight that can be shared.

Re: Question - BFS 24/7 Twitching

PostPosted: January 4th, 2015, 1:06 pm
by misterjuanperalta
I have the burning tongue sensation and twitch there too. I also have dry mouth. I don't twitch all day; it comes and goes. Do you have tongue twitches?

Re: Question - BFS 24/7 Twitching

PostPosted: January 4th, 2015, 4:00 pm
by Jenna
Thanks for your reply. No, I don't have tongue twitches that I've noticed but have read about several people on here that do have the twitches in their tongues.
I do have a really dry mouth as well though.

Re: Question - BFS 24/7 Twitching

PostPosted: January 5th, 2015, 7:09 am
by Xina535
Hi Jenna,

I have seen many people with MND state (and many posts on here) that if you have twitching in several areas which are sporadic (not constant in one spot), and especially no weakness, then that points away from MND. If you had twitching in one spot only, and with weakness, then that would be concerning. Many of us have constant twitches in many places, all over, so this is kind of a mix of both kinds of twitching. The key to MND would be if you have weakness and/or a dirty EMG.

Me personally, I started in July 2013, twitching started as random and sporadic, jumped from place to place and now I have that, but with "hotspots" - so twitches are jumping around everywhere but then my left shoulder for example, will just constantly twitch while the random, sporadic twitches are going off in my body elsewhere. There were times (several weeks) since July 2013, where my twitching died down to almost none, and it was very enjoyable, but I always expected it to act back up, and it did. I read from many also that if you have change in degrees of twitching (like me, going from constant to a few weeks of nothing), this most likely points away from MND, since in MND, the twitching is usually constant in the weak area until that no longer functions, then the twitching stops since the nerves are no longer communicating to the muscle.

As far as sensory issues, if you have them, then that should also point away from MND. Many of us do have these feelings like pain, soreness, burning, pins and needles.

Of course, there are those "special" MND cases where the symptoms did not progress as usual (for example, widespread twitching before weakness), and I feel this is the reason why many of us are scared and obsessed. But I also read that those special cases make up a small percentage of the MND cases, so that would be like getting the rarest of the rare.

Re: Question - BFS 24/7 Twitching

PostPosted: January 5th, 2015, 1:35 pm
by RIno468
when would it start to be concerning?

I used to have constant twitches in my legs -- by constant I mean not every second of the day -- but the same spot multiple times a day -- but they were also in other spots --

lately its surfaced to just my triceps and my back area on the right side. Its pretty constant -- no weakness that I can tell

I have slight random twitches everywhere else and I hate to go to my dr and bother them AGAIN with this -- but its like I want too--

this is so maddening -- I feel your pain Jenna

Re: Question - BFS 24/7 Twitching

PostPosted: January 5th, 2015, 11:56 pm
by Jenna
The sensory issues are more maddening than the twitches because its hard to do day to day activities, work, etc while I'm having these crazy skin burning sensations. The twitching is a newer symptom that has just added to my worsening health anxiety. Not to mention, my brain MRI found a left frontal lobe lesion that none of the 3 neurologists can seem to tell me what it is. I've had varying degrees of opinions from 3 neurologists (one being a neurosurgeon oncologist that I went to on my own). I've been told my burning symptoms are not likely from the left sided lesion because the burning is on both sides of my body and usually a the same time (example, right now both hands are slightly burning and palms are sore).

Started to notice twitching two weeks or so after starting Zoloft (low dose at only 25 mg). It is annoying and worrisome. You are right, sure is nice when it dies down some but seems to always come back. I've read the same, that its more concerning if twitches are associated with weakness and not sporadic. It's hard to get the constant fear of MND out of your mind when tHe twitching wont let up. I think personally, I'd feel better about twitching if I had twitching for a six months to a year and no other progressive symptoms. That's just me personally.

Thanks all for responding. Definitely is helpful to know we aren't alone and have a good support symptom with all the people on this forum. :mrgreen:

Re: Question - BFS 24/7 Twitching

PostPosted: January 6th, 2015, 5:07 am
by Xina535
It would be concerning if there was weakness, true weakness, not just feeling like you are weak. This is something only a doctor can detect. Of course, if you had intense pain or other symptoms that are unbearable, that would be concerning.

I felt the same way, that if I got to the 1 year mark after twitching, with a clena EMG, I would be free from the anxiety. But, other symptoms happened, and I got trapped in the anxiety circle. I felt I was on my way out many times, but new, werid but scary symptom = panic!

A personal recommendation - stay off the internet as much as possible, just speak with medical doctors in person. Act like you have these symptoms back before the internet existed, and just go straight to the doctor for any concerns.