Hi I know I have seen posts that other have had twitches that they can see but not feel. I have had a hotspot area that was thumping like mad for several days and it finally seemed to let up but when i looked down to the area ( outside of my right ankle) i can see it twitch. It is more like a pulse that a twitch, like if you were watching someones pulse on their wrist. I called my neuro today because it just kept eating at me and totally expected them to blow me off and say it is nothing but they said they want me to take a video of it and come in tomorrow. Now I AM starting to freak out. Has anyone experienced a "twitch" like this? Should I be worried?Shelly
Twitching Hotspot on Ankle, No Feeling
- Thread starter mymy16
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AllGoodHere
Well-known member
Yes I had one of those yesterday. I think most people have them (especially here). However, if you can't feel them, why worry about them? It's not an esoteric question; if you weren't looking for it or it wasn't in your face it would not matter. It is beyond me why your neuro would respond like this unless of course he could hear the worry in your voice and wants to reassure you. Hopefully it is not becasue he just bought a new boat and needs more money for payments or they had a cancellation to fill. 
Let us know what is up with that. Many people here have posted their twitches on YouTube - another activity that is hard for me to understand. Nothing you have said about what happened with you sounds out of the normal for the forum - that is for sure.
Let us know what is up with that. Many people here have posted their twitches on YouTube - another activity that is hard for me to understand. Nothing you have said about what happened with you sounds out of the normal for the forum - that is for sure.ionyZarrion
Well-known member
I have thousands of twitches just like this everyday for like 7 and a bit months...I know for a fact that MANY other have too...its even in bfs in a nutshell.....look if your lying in a hot bath after a while u stop feeling the hotness right? the water isnt any cooler ur body has just adjusted right? its the same with the twitches...if ur having a prolonged hotspot then OF COURSE ur body is gonna block it out.If u read back on posts from Jro and Simon u will see that they had twitches they didnt even lnow they had under sitting in direct sunlight...Take a video of it and bring it in???That sounds like money grubbing to me.No worries eh..Try to redefine normal and move on from this.Darragh
SmartMister
Well-known member
I so agree with ImOk and Daar. First of all like ImOk said if you can't feel it who cares. LIke I told you yesterday for me its out of site out of mind if I can't feel them I just don't care. And like Daar said after a while you get so you used to certain areas going for a long time you block them out for me it is my calves. The ones I find hard to ignore are in the ribs abdomen face etc. These are annoying. But anyway I agree either he needs the money or they think you are worried. Either way you will be fine and I look forward to hearing that tomorrow. You are fine Shelly 
) Mary
) MaryWell I did go to the neuro today and actually got by without paying for the visit . So no cushy vacation for him anytime soon. ) I walked in a few minutes before my scheduled appt. and the dr. was at the front desk eating his lunch so he comes out to the lobby and looks at the video on my phone and then looks at my ankle and then tells me that it is probably just my pulse showing. He really just blew me off like why the heck are you wasting my time. I know for a fact it isn't my pulse because it twitches 2 or 3x faster than my actual pulse. But after much boo hooing thinking I was going insane I have come to the conclusion that if he isn't concerned then I guess I shouldn't be either....right? I just wish these drs. had a little more compassion for reassuring their patients. I know that there are patients that do acutally need them for their neurological disorders but they have to know that we are scared s***less about this stuff. I really wish I could reach that point that I know that I am going to be okay.....deep down I know I am but the mental crap is what always sets me back. Thanks to everyone for your reassurance!Shelly
) I walked in a few minutes before my scheduled appt. and the dr. was at the front desk eating his lunch so he comes out to the lobby and looks at the video on my phone and then looks at my ankle and then tells me that it is probably just my pulse showing. He really just blew me off like why the heck are you wasting my time. I know for a fact it isn't my pulse because it twitches 2 or 3x faster than my actual pulse. But after much boo hooing thinking I was going insane I have come to the conclusion that if he isn't concerned then I guess I shouldn't be either....right? I just wish these drs. had a little more compassion for reassuring their patients. I know that there are patients that do acutally need them for their neurological disorders but they have to know that we are scared s***less about this stuff. I really wish I could reach that point that I know that I am going to be okay.....deep down I know I am but the mental crap is what always sets me back. Thanks to everyone for your reassurance!ShellyJohnnyRocket
Well-known member
In the last couple weeks I have had hot spots on the sides of my ankles, which is a bit new for me. I also have occasional twitches like pulsing as you described. I'll notice a twitch repeat itself at steady increments to a point that I wonder if it is my actual pulse. Then I'll take my pulse and realize that it doesn't match. It has never concerned me (why would it?) but I did think it was weird. Glad to hear I'm not the only one.
Thank you for all the reassurance! I'm glad that this is not out of the realm for BFS. I even saw tripper post about the pulsing twitches. One question.....I know some neuros will call it BFS and some will just say it is benign (as my neuro does). Has anyone had a neuro ever try to explain what is to be expected and what is "normal" from this. I really feel like I am getting no answers from my neuro. I even told him that it felt like worms in the arches of my feet and him comment was, "well I'm not sure about that", I definitely get more information from this site. I'm wanting a Dr. that understands that this is a real condition and not in my bleeping head.
JohnnyRocket
Well-known member
I wouldn't expect too many answers from your neuro. If I recall correctly, more often than not, most neuros just call it "benign twitching" and blame it on stress and other factors. They typically don't know a lot about it since it isn't life threatening. At least, this matches my experience.
JohnnyRocket...thanks for the replies. And you are correct the neuros don't have any real information for us. I am amazed that you only went to one neuro appt. and said the heck with it "i'm not going back" and managed to stay off of any meds. Even with multiple neuro visits and meds somedays I feel like a total mess. 
. It just frustrates me that I don't know what is expected as "normal" for BFS. Only being 5 month into it something new always scares me. I guess time and this site will make things manageable.Shelly
. It just frustrates me that I don't know what is expected as "normal" for BFS. Only being 5 month into it something new always scares me. I guess time and this site will make things manageable.ShellyBarbiePetals
Well-known member
You will get twitches you can see but can't feel and twitches you can't feel but see. It's just part of this crazy condition. Trust me, I have had it all and 2 years later I am just fine. You will be too. )
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