Go ahead and vent....

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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Go ahead and vent....

Postby bobajojo on August 15th, 2012, 12:22 pm

I'm going to bring back an old post idea from mommylondon last summer. I was in the early stages of BFS and she had a post titled "Vent your symptoms here". It was so helpful to just be able to get it out and read what others were going through. I've seen a lot of new twitchers on this site and the chat site lately so I thought this might be a good thing to bring back. I'll get it started....

* *beep* tongue twitches. Just when my "pulling twitch" seems to be getting a little (just a little) less frequent, I'm now getting very frequent thumping twitches right in the middle part of my tongue. I hate tongue twitches.
* Elbow and forearm twitches. These have been going on since early June and have been 24/7 ever since. At first, I noticed a constant twitch in between the bones of my right elbow. Theasn I just checked out my left on for kicks and sure enough, its there too. About a month later, I started getting tiny twitches all over my forearms. Its more like a flickering. I can feel about half of them. The other half I can only see.
* Involuntary jaw jerking while drifting off to sleep. EVERY single time I try to fall asleep I will get to the first phase of sleep and then my jaw clamps shut and I wake right up. Sometimes I bite my tongue. So frustrating!

Ahhhhhhhh..... feels good to get it out! Who's next?
Over 10 billion twitches since May 2011.
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Re: Go ahead and vent....

Postby Yuliasir on August 15th, 2012, 12:31 pm

I hate my GERD related symptomes! THEY SUCKS!!!!!!!!!!!!!!! all that balls in the throat, pain in the chest, coughing after meals, feeling like you swallowed a Sonic hedgehog... HATE THEM!!!!!!!!!!!!!!!
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Re: Go ahead and vent....

Postby tessa on August 15th, 2012, 12:39 pm

I am now 10 months into this and still scared to death. I visited a neuromuscular dr. 5 months in and he said "you do not have als" I just can not seem to move on. The twitching has not gotten any better and I also have alot of muscle soreness. It feels like I get tired alot easier as well. I still continue to strength test and sometimes I swear I am weaker. I try to tell myself that after 10 months if it were the big bad it would be pretty obvious but I just can NOT beat the fear! I would not wish this on anyone!
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Re: Go ahead and vent....

Postby volfan on August 15th, 2012, 2:52 pm

ahhhh....yes - all those things that really still bug the crap out of us. Mine is waking up numerous times in the night with a numb limb or body part. The twitches, pain, tongue biting, etc. bug me too but since those are mainly day time things I can't focus on them as much cause I am so darned busy. But once I have been woken up in the night, then the mind starts to play tricks on you. If I didn't wake up due to the numbness, I think my mental state would be better!

Hey - on the bright side, due to BFS I have met Greg and Matt and have really enjoyed my time spent with them. If I wasn't so old, I would enjoy them more. KIDDING!!!!!!!
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Re: Go ahead and vent....

Postby LApea on August 15th, 2012, 4:53 pm

I'm new here and new to twitching!

I have twitching throughout the day, not 24/7 though. I get them mostly on my arches, calves, thigh, stomach, and bicep area.
I have very sore muscles on my shoulders, stomach, and legs..pretty much my whole body.
My left foot arch feels like it want's to cramp up, this is new and scary to me.
I also have muscle jerks on my legs mostly.
My toes and finger move on their own sometimes.
My joints and bones feel achy and tired.

There are many more random symptoms too. I am only 6 weeks into this so it is much more scary for me, I don't know if things will get better for me or get worse. The not knowing sucks!
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Go ahead and vent....

Postby DreaCerda on August 21st, 2012, 5:13 pm

Venting....!

I've been dealing with BFS (possibly BCFS) symptoms now for almost six months. Its fairly off and on other than the feet vibrating or what I call "purring". It literally feels like someone left a cell on vibrate near my feet, so much so, that on one occasion, I thought it WAS a cellphone on vibrate near my feet. Fortunately, this only happens when Im at rest and not on my feet. Its also the only symptom other than mild twitching that never goes away. The cramping will go, the stiffness will leave and so will the throat, mouth, and tongue issues. But the vibrating stays.

My mouth issues are the most annoying and the most concerning or scary or whatever. My tongue twitches and sometimes feels like a little electric shock. Breathing is difficult at times as is chewing and talking from time to time. My tongue will get a heavy feeling, thick almost, as if it's too big for my mouth. I've now had to start sleeping with a mouth piece to prevent night time tongue biting. Sexy, right? My throat and tongue, like my legs, also suffer from stiffness along with twitching. Pretty uncomfortable feeling. Climbing my stairs (I live upstairs) is a chore as my legs get fatigued quite quickly and also cramp, like pre-charlie horse cramps. They never completely develop though.

My symptoms dont seem to worsen with anxiety. They just come and go on their own. Anxiety or no anxiety haven't seemed to make the issue worse or better either way. I dont take any meds, I don't drink often, dont smoke, I eat fairly healthy (although, I do enjoy the occasional junk food session), and all my vitamin levels were normal. Ive seen Dr. Miller at Forbes-Norris ALS clinic in SF, Ca and have an ALS specialist here (Dr. Jeffery Rosenfeld). Both had said that he felt it was benign twitches with cramping. So, my issue is, I'm still scared. My stuff will go away for a few weeks, and then come back. While it's gone, Im fine. When it's back, that's when I start to freak out. All my ALS fears have returned recently, when my mouth issues came back. I get scared and panic a lot. :\ I don't know what to do anymore....I guess time is the only thing that can make me feel better. :cry:
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Re: Go ahead and vent....

Postby Yuliasir on August 21st, 2012, 11:22 pm

Do not worry about mouth issues. All what you describe is very common anxiety set - short breathing (could not inhale as much as you want), fat tongue, a bit of slurry speech (not even noticeable to other sometimes), swallowing is difficult, tongue biting at night etc.
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Re: Go ahead and vent....

Postby jerry2 on August 22nd, 2012, 2:06 am

I am 10 months into this and I am still scared to death. I had about ever symptom possible like joint pain, foot nerve pain, buzzing in limbs, patesthesia of hands and arms, night tremor ay hands, persisting inner arch foot twitching, hip twitching, twitching everywhere but tongue etc...

But I REALLY HATE WHAT HAPPENED TO ME 10 DAYS AGO: one day the morning shaking of the thumb switched to thumb twitch in the morning. the next day it didn't stop during the day and it is literary 24/7 there. I can show it anytime to anybody. I fear my nerve is disintegrating and I have als there. I just wish it would stop for 1 hour to show me it can stop... I hate this twit h more than any other symptoms (ironically paresthesia and buzzing seems to be better this days which makes me even motre als scared than before). I wish it would stop at least for a week while is (not) enjoying my holiday thinking it must be the last holiday I have...
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Re: Go ahead and vent....

Postby Shanny63 on August 22nd, 2012, 2:16 am

im not worried about any nasties anymore.....but im still going to vent.... :lol:
eyelid twitches non stop top and bottom both eyes...can u believe that...BOTH :shock:
feet still twitching non stop and of course left foot buzzzing away happily
thumpers in the middle of my back
behind the left knee twitches.
and of course my tongue is twitching away most days as well...
ah well another day with bfs.....
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Re: Go ahead and vent....

Postby DreaCerda on August 22nd, 2012, 9:43 am

Ugh, Im always worried about the nasties. I wasnt for a while, but since everything is starting to get worse again, now I do. I hate it.
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Re: Go ahead and vent....

Postby lrbrown1 on August 23rd, 2012, 1:24 pm

My twitching has basically stopped all over, but my freaking right foot never does! It's the only place that has been twitching from the very start and it still is!!! Sometimes I get scared because it's the only place twitching now.
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Re: Go ahead and vent....

Postby danny13 on August 23rd, 2012, 3:48 pm

bobalo, My right forearm has been twitchisn, more spasming since this all started, almost 3 years ago. Every muscle in my body has twitched in past 2 years, from head to toe. Sometimes they last for a minute, sometimes for an hour, maybe for a few days, but thank god other then the forearm, they all go away. Been to 5 top neurologists, all say same thing, your fine, try to relax, and deal with it. Good to know other people have this condition, as speaking to others on this forum is better than talking to 100 neurologists. Keep the faith guys, we can beat this!!!!!!!!
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Re: Go ahead and vent....

Postby Seepi27 on August 23rd, 2012, 4:02 pm

You want venting? I'll try, even though by nature I'm a shy, retiring soul:

- I'm almost eight months into this and I still sh*t my pants - metaphorically - several times a day, thinking that I should really get myself down to the shopping centre and order a wheelchair. I've had three neuro clinicals and an EMG, and if people think that this equals reassurance, then they're sadly mistaken.

- calves and arches. These twitch round the clock, although the severity waxes and wanes. I feel nearly all of them and they look like firecrackers going off under the skin. "BFS normal", people tell me, but should 'BFS' and 'normal' really go in the same sentence? Because it doesn't feel 'normal' at all: there are more 'snap, crackle and pop' moments in my calves than in a hundred bowls of Rice Krispies, and that' ain't normal.

- the 'random hitters'. For months, my twitching was confined to my calves and arches. This worried me - everything worries me - because I'd heard somewhere that 'bodywide twitching is a good sign that it's benign'. So for ages, I longed for some other limb or organ to twitch. When it eventually did, it was time for my pants to turn brown again. Widespread twitching = benign? How could that be? Calf, thigh, bicep, temple, chest, butt, eyebrow, forehead, throat - my body is now like a pinball machine for random twitches. Most bizarre random twitches? Anal sphincter, without a doubt. First time it happened, I thought an insect had crawled in.

- hotspots. Mine don't last long, but when they come - and their appearances are increasing - they are like a twitching cabaret show. I had a bicep hotspot, albeit not for long, which was like the rat-tat-tat of a machine gun, and could be seen from the other side of the room.

- the inability of non-twitchers to understand. This is particularly aggravating. "It's *only* twitching", they say, patronizingly. Yes, and vomiting is *only* bits of food coming out of your mouth, but would you like to vomit round the clock??! Now don't get me wrong: friends and family are very supportive - but in the way that the French supported the Allies in World War Two: at a distance and from the comfort of their own homes.

- conflicting information regarding BFS. I don't want to dwell on this, but it does my head in when I read how benign I obviously am one day, only to find out the day after that I really should be planning my funeral after all. This usually happens courtesy of Dr Google, who really should be struck off the medical register. Hell, he needs his b*llocks sliced off with a blunt knife, if we're honest and venting, which we are. I'll provide the knife.

Enough venting already? I'm only half-finished, but my left thigh is having a twitching competition with my right elbow to see who can make me sh*t my pants the quickest, so I have to go and obsess a bit. It's what I do best.

But before I go, I'd like to do an anti-vent and say how heartwarming it has been to find so many kindred spirits, not just here on the board but also in the Chatzy chatroom for BFS recovery, which MommyLondon (Leanne) set up well over a year ago and which has provided hours of support - and fun - for many apesh*t crazy BFS worriers like me. Without these resources, I would be a poorer - and no doubt twitchier - person.
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Re: Go ahead and vent....

Postby LApea on August 30th, 2012, 11:24 am

Seepi:

Trust me I know there is nothing funny about twitching, but your descriptions gave me a laugh. Sorry, just the way you wrote it was pretty clever and very familiar too. You described it very well, like a pinball machine..that is exactly how I've been feeling lately also. I also hate that Mofo Dr. Google. I made the mistake of googling a symptom yesterday and stumbled on some scary things and I just about shat myself. I wish I had some magic potion to drink and make it all go away, not too much to ask, right!!?
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Go ahead and vent....

Postby Seepi27 on September 1st, 2012, 6:13 am

LApea wrote:Seepi:

Trust me I know there is nothing funny about twitching, but your descriptions gave me a laugh. Sorry, just the way you wrote it was pretty clever and very familiar too. You described it very well, like a pinball machine..that is exactly how I've been feeling lately also. I also hate that Mofo Dr. Google. I made the mistake of googling a symptom yesterday and stumbled on some scary things and I just about shat myself. I wish I had some magic potion to drink and make it all go away, not too much to ask, right!!?


LApea, I think we all agree that Google is a double-edged sword: great when it works in your favour and pretty disastrous when it doesn't. And it should come with a hazard warning for people with health anxiety.

Having said that, it's not just hypochondriacs who get a bad deal from Google. I once linked a bunch of my students to the London Philosophy Study Group (LPSG) so that they could access some material. They promptly Google the acronym 'LPSG' and where do they end up? The "Large P*nis Support Group", that's where. I'm not kidding: you can try it for yourself.

I did and I'm now a paid up member. Just saying. :D

PS there endeth the lesson on the horrors of Google. If in doubt, don't Google, it's as simple as that.
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Re: Go ahead and vent....

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