When Do You Accept BFS/BCFS?

Highlights Only
Y

ySplendidCrafts9

Well-known member
So, I was wondering when do you finally accept that you have BFS/BCFS and not something that is fatal or going to get worse? I tell myself I have BFS and that is it, but then my mind tells me...what if? What if it is slow onset, what if it is parkinsons, what if it is Issacs, ms, mercury posioning, lyme.... When does it stop? I feel like my anxiety is much less from when I 1st started, so shouldnt I be getting better not worse??I have had twitching in my left foot (non stop) for about 7 months now. I got some in my right foot, calves, tongue , legs. Now, 7 months later, I am not getting any better I am getting worse! I am now getting them regularly in my shoulder blades, arms, hands and back of thighs!I keep having muscle pains too! It seems to follow a similar pattern...I will get pain (shoulder blades) and now they are twitching! Yesterday it was the back of my thigh and guess what? Now it is twitching there too! Also, everytime I move my leg a differnt way it seems like it is going to get a muscle spasm!I feel the most twitching in the morning when I am most relaxed! How is that BFS??
 
I wish I could tell you when the fear ends. I'm not there yet. It's "only" been 6 months for me. For some, that is enough. I keep thinking the one year mark will make it sink in. One of the biggest problems is paying attention to new symptoms as if they are something to worry about. Unless it's real weakness, it shouldn't be a concern--at least for the diseases we fear. Easier said than done. I have cramping and twitching too. I feel like I get rid of the tiniest bit of anxiety with each day that passes. Meds help too (Zoloft and the very occasional Ativan.) If it helps, you don't sound any different than many on the board. And they are fine.
 
Chez,The "When do you accept you do not have a deadly disease?" varies for everyone. For me, it took one week, this board, and one neurologist appointment...and I've never looked back. For others, its years and still counting. At this point in time, it seems to me that it is more your anxiety, than your twitching, that is hurting you. You think that you are "worse" than you were back when you 1st started twitching...however is it possible that you might be having a flare up? Every single one of us have had a flare up of one kind or another...some are horrible and make the person miserable, some are just annoying, some last a day, some last months. It all varies, and there is no NORMAL way for you to twitch...there is only "BFS Normal"...and that is different for everyone.I think the more important question is..."When do you accept that you are losing time every single minute you worry?"...when you can do that...is when you accept you are fine, and thats when the living really begins (or returns). Good luck hun....
 
I get comforted now by looking at other members responses to new people on this board. All the symptoms that i forget to add to my original post are for the most part covered by other members. its like ..ok, flare up day (or week coupled with new symptoms) and then I come to find on this board that others have already experienced this...Though occasionally I do get my friend or mom to perform a clonus/babinski on me when I am really scared...atleast to rule out any possible upper motor neuron conditions. As far as lower motor neuron tests...you could do something as simple as tinel sign which can provide info about nerve compression/irritation...u can find more information about neurological tests and screens for upper motor and lower motor neurons to help calm yourself down. The numerous screens are quite easy to perform if you have help from another person and are available on video by youtube...be mindful that if you or someone else is performing a reflex test on you, take it with a grain of salt...many people with brisk or absent reflexes are normal....this should help you accept that it is just BFS....I read this post on this 45 yr old guy who thought that he had ALS...so he started doing a journal of himself...all the tests came back negative, however, he continued to pursue the idea that it is slow/progressive MND...he did this for 20 yrs might I say...turns out after 20 yrs he finally was convinced that he had BFS. He started by doing 20 pushups every night, over the course of 3-4 months I think...just to see if he saw any weakness...keep in mind, weakness (clinically) would suggest that you go from doing 20 pushups one night to 2-4 pushups the next if not fewer with no reasonable explanation. If you have thoughts of leg weakness, do 20 wall squats with a pillow case behind your back to remove friction and note your results...one last thing...when they say that BFS fascics only occur in a relaxed muscle...it doesnt mean that fasciculations wont occur if you're curling a 1/2 lb dumbell or a pencil for a matter of fact...there needs to be reasonable load on the muscle, enough to place tension on atleast 60% of the muscle fibers composing that muscle. Please feel free to pm me if you are havin a bad day, im having one right now...but I worked out a bit (within limits) had a protein shake, and am gonna watch the hangover movie.Regards TUB..
 
It takes time to accept the BFS diagnosis. I have been having twitching for 3 months and there are days I am scared to death and then there are days like today where I put my anxiety away and felt great and only twitched a few times. For some people it takes years and many doctor visits to finally accept it. For me, this board has been a lifesaver and am slowly coming to terms with this. I was reading an old post on here I don't even know who wrote it but it was a saying "Get busy Living, or get busy Dying". I remember this from the movie the Shawshank Redemption. It really started to sink into my brain for some reason. I have spent the last 3 months in terror and tears. I don't want to worry anymore. I don't want to miss time with my husband & son anymore. So, I am trying harder than ever to accept it, and you shoud too. :)~Leslie
 
I'm eight months into that stuff now, and I accepted it two months ago. It's just logical: If nothing significant changes (and a hotspot here or there shouldn't be considered as a changing symptom) within six months AND the doctors tell you're fine, it must be that way. Body-wide muscle twitching without any signs of real weakness after eight months is just not enough for it to be ALS, seriously. Look at me folks - if I had ALS, I would have at least one paralyzed finger or foot by now, more probably I'd even be in a wheel chair - nothing of that has happened.BFS is a really weird thing, nothing as well explored as an allergy, asthma, shortsightedness or something else more common, and that's why it scares so many of us... I think that it would be the best to just accept BFS as a benign condition, even if it is a relatively rare one.
 
I agree the lack of knowledge about BFS is a real irritation with all this. Asthma is a good example of the other extreme. I am a middle school teacher and it seems all my students have asthma.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top