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Question on twitching that returns to the same location

PostPosted: November 2nd, 2014, 2:28 pm
by ScaredWifesHubby
Hello everyone,

I am trying to help my wife with some concerns she has about twitching that returns to the same location, and how it might be different between BFS and ALS.

She has had twitching in other locations before, but the one bothering her most right now is located on the back of her upper leg, about half way between the knee and her buttocks. This started a couple of months ago and has been there continuously, but she has noticed there are times when it goes away for a week, but then returns to that same spot again. She describes it not as a big twitch or a 24/7 twitch, but as a series of rapid twitches which occurs every 5-10 minutes.

I tried to reassure her that if it were anything sinister it wouldn't go away for a week in the first place, but would be there continuously.

But she does a lot of reading and has read about the process of denervation and re-nervation in ALS and is afraid that could be what she is experiencing. Her fear is that the twitching happens when nerve cells are dying off, but then stops after re-nervation has re-established the connection. Then the twitching comes back to that same spot again when more nerve fibers are dying off, etc. When I try to tell her that she would have experienced weakness during this process, she counters with the fear that a certain number of muscle fibers must be effected before you notice weakness. She read somewhere that 50% of muscle fibers must be effected before a person would notice weakness, and she is afraid that could be what she will eventually experience if the twitching continues to come back to that location.

She has had hotspots before and knows this is probably considered one, but is concerned this might be the process at work when it continues to return to the same spot.

If anyone has any knowledge or experience which would help me alleviate her concerns, I would greatly appreciate hearing them.

Thanks.

Re: Question on twitching that returns to the same location

PostPosted: November 2nd, 2014, 4:21 pm
by MarioMangler
It's just a hotspot. Everyone with BFS has those. Tell your wife to stop reading so much.

Re: Question on twitching that returns to the same location

PostPosted: November 4th, 2014, 4:04 pm
by Wolvesbite
Hello,

I don't come on here often anymore, I go onto the BFS facebook group, but every now and then I will have a look on here.

I saw you post and felt compelled to reply

I've got a single localised thigh twitch on my outer thigh. If you read my posts you'll see this started last October, a year ago. It was constant like a pulse for approx 4 months, stopped for a few weeks then came back in January of this year and has stayed ever since, it's not every second any more but I do get it multiple times a day, it's probably twitch 3 times when typing this. My thigh has become indented where it twitches and feels lumpy. . It drives me insane. I had my thigh EMGed back in March and it was normal, but the twitch continues. I do have bodywide ones, mainly my feet, and backs of thighs and back. These are single one of pops.

I can totally understand your wife's worry, but all I can say is I can still walk a year later, and it's now indented! I can still run, and couple of weeks ago did 22 miles on my bike. I've read all the same as your wife and all I can say is, if she's had an EMG she is fine. There are lots of BFSers who have recurrent twitches that go back to the same place. There on lots of example on the FAcebook forum, there are two groups, one is a closed & private group and is very active with support and reassurance.

Best wishes

Re: Question on twitching that returns to the same location

PostPosted: November 4th, 2014, 4:21 pm
by emmie.s
MarioMangler wrote:It's just a hotspot. Everyone with BFS has those. Tell your wife to stop reading so much.


100% what Mario said. Hotspots are not only common with BFS, but they're to be expected. Some people have twitching in the same EXACT spot for months, sometimes years. At any given moment, I can look at the bottom of my feet and see twitching that has been there for years (although I don't feel it) yet I am still stronger than ever.