Too Scared to Feel Brave Anymore

sorry guys...i've had it with being brave right now... i am absolutely terrified... and i really wish that i at least had a diagnosis to fall back on.... i called a neuro today and pretty much demanded an emg and some suggestions about the cause of the twitching - and all he would say is that we must rule out **s 'before' we bother to discuss other things...

as i've said before, i am having real troubles with my arm which i've described before as feeling fluttery; as if somethings going on in there but i can't quite put my finger on it - and literally i can't do that either - i have examined and prodded til the cows come home, yet i feel nothing...

and then, this morning, a ray of sunlight caught my shoulder while i was trying to look at - and suddenly it was so obvious - it was firing, rippling, wiggling under there - but only barely felt - completely different to the 'trigger pulling' type twitches that i get in my fingers and toes...

so i freaked completely - i called my husband home from work saying it was an emergency... troy, he arrived home just as you came onto yahoo... thanks so much for responding to me... thing is, when hubby discovered that the emergency was my twitches, which have been happening for months now, he was not overly impressed ... so i didn't think it a good time to say i needed to go chat on the computer ... and besides, you probably had a lucky call - i really was/am a bit tearful... :crying:

are there really many of you that can see but can't really feel your twitches, or only feel them very indistinctly... i don't advise anyone to watch a video of **s fasciculation, but if anyone has already seen it - do your twitches look anything like it? because i think mine do...

i am scared today - i just want to be here with my children and my husband, nothing more... and yet, i feel like that is asking soooo much...

I've felt fluttering in my left foot, also buzzing. A few months back, I got into bed and began reading a book. My left calf was resting on my right knee. I noticed slight sensations in that left foot and looked at it. Twitches galore!!! I'd say rippling. In less than a minute I was able to count 50 twitches (they were firing off all over the place) before I got so excited about it that I started calling for someone else to look at it. I wasn't frightened by it though... I was amused.

Remember it can't be ***, you don't have weakness.

Hi
I hope i can be of sum help, as i am feeling low my self today.

If it will make you feel better, I can say i have had all the symtoms you discribe. including the flutery feeling, and I have been diagnossed with BFS, or peripheral nerve hyperexitabillit(PNH) this is the term in the Uk for BFS. Symptoms are so hard to discribe sometime with this condition.

Always seek medical advice on any matter but i am sure you have nothing to worry about. This condition sends some stange feelings and symtoms, but it is however' benign. Please remember this.

It is also hard for our family's to cope with too. My wife gets sick of me going on so now i do not mention it. This is one of the hardes things to cope with as i feel so alone sometimes. But this site helps me cope as i am sure it will you. They must be going through hell trying to cope too.

Now and then we all get scared, but Hey why not this it is a horrorble condition and it takes alot of fight sometimes. But please hang on in there and keep up the fight. keep away from *** sites, don't go there! A big symptom with BFS is that little Devil that calls in now and then playing mind games, don't listen to it, you will be fine.

Threre is however a safe site i got from a sticky on this site called ( info. uk) this explains alot about the condition BFS, and may put you mind at rest, as will the all about BFS on this site.

What you have sounds like, nothing more than BFS, but always pester your doctor for peace of mind if you feel you need to.

Good Luck and keep up the fight

Chris

Hi Emma. I want to give you a cyber hug; which I'm allowed to do because it is my birthday. I have reached the ripe old age of 46 ) and I am sure that I never believed I should reach such a venerable age.

Like most on this forum I have had my share of scares, both real and imagined. I will not regale you with a litany of my woes, but I will say that it was this darn BFS that rattled me like nothing else ever had.

At first, I was desperate to compare symptoms, to assure myself that other BFSers felt just what I felt, that I was not the "one exception." I delved into the archives, and became an expert with the search button. I read all manner of things that both calmed me and freaked me out. I read contradictory information, and information that I didn't really want to understand.

Then I decided upon a course of action. I had enough similarity to brand myself a sufferer of BFS, and I decided that I would accept that self dx. I did not see a neuro (I have since, only because my dr. made me an appt.), and did not even consider having an emg. Next, I decided that I would not read anything that upset me, like newspapers and posts on the bfs board that I was unsure about. I understood intrinsically that when it comes to the subjective, that ignorance really can be bliss. This started me down a path of self-awareness about my whole self, and not just bits of me. I knew that my left leg felt wonky, weak, and twitchy but in the context of my functioning self, it was peripheral, and I began to see that I was indeed well.

I hope you have an amazing day, for you are truly an amazing person.

Basso

I went back and re-read my note to you. I'm afraid maybe I was coming off as callous in saying I was amused by my twitches... I don't mean to be. It's just the truth that I was strangely entertained by the phenomenon.

I can tell you that I know what it is like to be frightened for dear life. I had three doctors tell me they thought what I had was PD. I had planned who was going to take care of my children when I was gone and cried for weeks. All of us were having these symptoms so I figured it wasn't just me, but the entire family was going to eventually suffer this horrible fate. I had it the worst, so I was sure to be the first to go. Nevermind that no family has ever succumbed to PD all at the same time. We would be the first! No doubt in my mind. Totally irrational!

Anyway, I'm sure you'll be feeling better soon! I have no doubt your EMG will put to rest your fears of ***.

I'll be thinking of you...

Hi Emma,

I was you a few months ago, remember? And I still do have my moments. A large thumper...a new twitch..and my mind can go off on a short little panic. Pulse races, I can't breathe....(and Morris_M isn't even near?)...then I get a hold of myself. I remember that it is only the miserable, and quirky BFS.

You have been around too too long to not know this. Please don't let it throw you like this. When you talked to the neuro and he told you that you must rule out ***...did you make an appointment to do that? I hope so....it is important for you to hear it from the doctors own lips that you do not have it.

I felt the same way praying to just let me stay here with my kids, and hubby....I wouldn't ask for anything more EVER. Now here I am month's later wishing for a beach house, and a new car....you will be as selfish and forgetful as me before you know it. You are well, I PROMISE you. I might be selfish....but I never lie (really).

ristinaL91

You know something. I have twitches in my calves that can only be seen in sunlight. When the sun hits at a certain angle and helps create shadows, my "invisible" twitches become visible. I remember looking at my calves for hours wondering, what the heck was going on. The sunlight will increase the contrast and shadowing so the twitches are more visible. Doctors use a strobe light to look for those "unseen" twitches. A light that flashes at a particular frequency. The sun, of course, does not have that property. I hope you are a little more elaxed right now. I wish I had gotten your message sooner but I'm glad your very understanding hubby was there for you. I am honored that you even thought of asking for my help.

You are fine, believe it. I've been there and I'm proof that it's nothing to worry about.

Actually had a neuro appt. this morning and got a pat on the back and a definite BFS diagnosis (even with those twitches that only shpw up in sunlight). I went there to talk to him about weaning off medication and he did the usual tests, etc. BFS all the way, no reason to suspect MND.\

Thank you Lord !!!

Yes I have seen the video and yes mine look like that especially in my calves and feet. Other places I haven't noticed but I too feel the fluttering so I'm sure that I'm twitching all over. I have been twitching now nearly a year and a half without weakness or other problems - just did a 46 minute cardio workout today without issue.

I *just* read a post recently from a doc where a guy asked the question if anything other than disease process could make his feet look like ours. The doc said absolutely, named a bunch of possibilities, and ended with bfs which he imagined the guy had.

You're okay. Hang in there. I know how frightening it is and how strange the twitching looks but it really can be nothing...

Mark

LMO,

I've had constant twtiching in my calves 24/7 (literally) for 2 1/2 years today.

Sometimes I can feel them, sometimes I'll happen to look down at my leg while curled up on the couch or something and they will be dancing around and I feel nothing.

Quite a number of people on here watched that video and said their fascics looked like the same thing. Maybe if you do a search on "rolling twitches" or something like that you'll be able to locate the posts. I remember a gentlemen on here recently that said his feet and calves constantly "rolled" and have been most of his life. He had the whole work up and came out with the BFS diagnosis.

I know it is hard not to panic, I've been there many times.

Hang in there, (remember the reflex thing

Ginny