Finding Relief with BFS

[brittany29]

I am so glad I have found this site I have been able to read other post but have not been able to post until now. It took quite awhile for the admin to review my info I gues..Anyway, I just want to say that 3 neuro told me I have bfs..however I don't believe them and think it is ***. I am a 36 yr old female. I first started twitching (or at least this is when I noticed the twitches) in March of this year. I did find out in Jan I do have MS apparently there are 8 lesions in my brain. Had a spinal tap which supported this idea of the MS. I as of this date(knock on wood) have not had any "attacks". SO I guess I'm waiting for the MS..I guess it's behind the scenes at the moment. I have been a hypochondriac for 20 yrs seriously hyp..you name a test or disease I have probably had it..or so I thought...so needless to say this ms crap put me in over drive as far as my anxiety...I have really BAD anxiety. BAD! I'm over the ms dx now. In March I did start a disease modyfying drug called copaxone. That is around the time I started noticing the weird popcorn twitches. But perhaps I had them before but was not tuned into them( theat would contraindict the fact that I am a hypochondriac) so I'm going with this bfs is new to me. BFS is in no way related to MS I have done my research on that also I I saw a ms neuro at johns hopkins and a former head of nueurology at GW University in DC...so there is the begininng of my story..These twitches are everywhere. Most of the time it just a quick pop like a burst of energy that got release( impulse , I guess) I have been to my main neuro 6 times in the last 10 months about this even forced him into giving me an emg. Which just showed mild polyphasic (which I was/am concerned about) the neuro that did the test said this was a chronic pinched nerve in my L5, so now 10 months into this twitching still scared to death about the *** all three neuros say NOPE. Again, this twitching is everywhere. Seems the more I think about it the more I do notice it. I do take Klonopin at n ight..maybe it helps but I'm still having these crazy pops all over..once in awhile it will be more than one pop...I usually can't see it cause by the time I go to look (I move of course ) it stops. Now i was beginning to think I have Isaac symdrome..but I don't know. How long can this go on ..does anone think it could actually be a reaction to my meds..my neuro says no. Is there another test I should ask for or another emg since it's been 8 months since the last one. He said I don't fit the criteria for emg the last time but did it any way. I know I probably sound like a crazy, rambling lady, but I just need some help..I want to know if this could be more than just bfs....My neuro said I have and overactive cns and lots of anxiety. But really, I have had this anxiety all my life. Help!...thanks....Jen

 

[simonw00]

Hi JenAS Jeffrey says, if your neurologist has given you the all clear then this must be a really encouraging sign... they wouldn't tell you that the twitches were benign if they weren't absolutely sure, especially given your known potential for MS symptoms. RegardsSimon

 

[Krackersones]

I will start by saying I also do not think you have ALS. But since you have a diagnosis of MS or are at least being treated for it, it seems a bit too coincidental for the twitching (if it is indeed very pervasive and noticeable and not just the small amount everyone gets) for you to not do a decent amout of exploration as to whether there is a connection between the two. There may not be but they could be. I know you said you saw two neuros from in two very prestigious positions. However, you did not say whether they were neuromuscular specialists. If they were not, I would try to see one. In my experience, the neuromuscular specialist had more experience with muscle twitching and was able to speculate a bit more on what might be going on even though definitive answers were not forthcoming. I am only suggesting you do this because I honestly believe from my experience that this additional step if not already taken, may lead to another hypothesis (involving a connection between the demylination in your brain and possibly some demyelination in your peripheral nerves based on your symptoms) that may be less worrisome and may connect with a treatment or cure. I know going to doctors can raise anxiety. If you don't see another, I wouldn't think you are being negligent. But when you have two things going on, you definitely want the best specialist in both types of symptoms weighing in if you can.