OptimisticGuy
Well-known member
Hi Everyone I hope your all keeping well !! I have been using the BFS facebook group (The private one) more often and not visiting here much but I will keep popping in when possible!I received a couple of PMs from a concerned member and I thought it would be good to post about my recent follow up appointment with my neurologist which occurred a few days ago.My story in short: 4 years ago I had a chin hot spot (Lasted 4 months) and some general body wide twitching however once the chin stopped twitching I stopped worrying and my overall twitching became background noise but I still twitched all over to a certain degree, I thought this was a normal acceptable level of twitching.Fast forward to Sept 2013: I became a father for the 2nd time and had a couple of weeks off work with very little sleep and then on going back to work it all went crazy... I had a twitch on the end of my tongue for months prior to my daughters birth but it was pure hit and run and sometimes a buzz but I never got to actually observe it and with having the history of my chin twitch I though hey I twitch but I feared it staying constant like the chin had 4 years prior.Yip you guessed it .... My tongue started to twitch constantly on the tip every 20-30 seconds in frequency or every time I spoke and said words ending in sss or zzzz and if I touched the back of my teeth it fired every time too !! I put up with it for 2 weeks then I freaked fearing the worst... after all this was a TONGUE twitch !!! You all know my fear... I was so scared I couldn't function properly at work and genuinely thought I was dying, all I could think off was my wife and kids who are 2 yo and a new born.My regular GP gave me diazapam (Valium) to calm me and I found this helped me initially but it took months to get back to normal mentally, my GP also gave me a referral letter to see a Neuro given I was so concerned and that it was my tongue but the GP said its most likely BFS (Actually used the phrase BFS).So I seen the neuro next day at a private clinic who gave me a full clinical and said everything looked normal except the twitching and put it down to nerve hyper excitability and he also used the term BFS ! He said I did not need an emg as he can see nothing other than twitching but I was really upset and scared so I got one four weeks or so later... The results were normal... No signs of MND, no signs of pathology and everything tested well within the normal range to be expected for a healthy person.Over this period of months I started to twitch more frequently and even developed a hot spot on my tricep that went every second or so constantly 24/7 for 9-10 weeks with no stopping but guys it stopped just like my tongue stopped after 14 weeks, sure it still twitches the odd time but its not happening as often and I don`t stare at it any longer... I twitch 24/7 all over and my calves are constantly popping and crawling, I get twitching that I see, twitches that I don`t see, twitches that I feel and twitches that I don`t feel... I get fast ones and slow ones, all kinds of twitching!My face, my limbs and general body areas like abdomen and chest.I even get ones that are like lightening bolts that almost make me jerk but they don't happen that often..I get an achy tricep and arm round the area of the hot spot, even today and its not been constant for a couple of weeks and it feels achy...My Follow up appointment:Firstly my Neuro seen that I was in a better place mentally and he asked how I had been and he said this is fantastic, I told him my tongue had eventually stopped after 14-15 weeks and I also told him about my tricep hot spot which he observed along with my calves constantly flickering and he was not excited at all... He said its going to happen and that he is 99% sure his DX was correct in saying its BFS. (He even said his calves twitch quite a lot.)If this was MND he said 4 months later your going to see a definite change for the worst and secondly he explained that if MND was actually causing the twitches they would have found evidence on the EMG/NCS and in the clinical with reflex changes etc4 months later I actually feel a bit better albeit I twitch all over every day but as my neuro explained its a mental battle too, he said he sees a lot of twitchers who are very concerned but most of the time is nothing to worry about just like BFS !He explained a lot of things and gave me 20 mins to discuss the whole situation, he quickly tested my reflexes on my ankles and knees and reassured me on the BFS DX. He didn't even strength test me or check muscle tone etc as per our first appointment.He Explained his job is to observe and identify patterns and my pattern was BFS as so many who found this site before me, he explained that when an MND causes twitching it wont stop until that area actually dies, you wont get good days, you just decline, I feel that is something everyone should take note off.I asked about my pain in the arm that twitched and he asked are you able to function as you were before and I replied yes and he said given the clinical and EMG etc its time to stop worrying.As a last word of advice he said this
eople who twitch that come to see him fear the worst but once they realize that twitching is not something bad they can get their lives back as they just have to accept that twitching is the new norm, he said it might go away but it might return, it might get really bad then ease off etc but he said just remember its not going to kill you as its benign.He didn't ask for another follow up and said goodbye.I shook his hand and said see you soon... Then I was like ummmmm no I didn't mean I`d see you soon ... We laughed and I said, see you around to which he replied yeah just not here!
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eople who twitch that come to see him fear the worst but once they realize that twitching is not something bad they can get their lives back as they just have to accept that twitching is the new norm, he said it might go away but it might return, it might get really bad then ease off etc but he said just remember its not going to kill you as its benign.He didn't ask for another follow up and said goodbye.I shook his hand and said see you soon... Then I was like ummmmm no I didn't mean I`d see you soon ... We laughed and I said, see you around to which he replied yeah just not here! !!