Thankful for This Website!

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tearsneverfall

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I can't express how thankful I am for this website. No medical professional I have seen mentioned this possibility. I am a 38 yr old male who used to think rationally but is now an absolute wreck after suffering through 3 of the worst weeks of my life to date. I somehow deduced that I have some type of degenerative motor neuron disease (AlS, Parkinsons, etc.) It started out as twitching in right arm that you could see then progressed to legs, back, neck...everywhere. Then one night out of the blue I felt a distinct buzzing/transformer sensation that went throughout my limbs as I lay in bed panicking thinking "oh my God I have some sort of nerve disease." That initial panic has since prevented from sleeping more than 1-2 hrs at a time, most nights and then only with the aid of an Ambien, Elivl, or now Valium, none of which keep me asleep for more than a few hours a night. In addition to the constant buzzing sensation I have muscle twitching occurs anywhere from my head to the bottom of my toes. You can even see my big toe move from the twitch in my foot arch!. Sometimes I even feel a slight burning, pulling senastion which really freaks me out. At night I can feel and sometimes even hear the twitches which keeps me awake! I have been to the ER 3 times, and my GP, who finally relented and ordered a neuro clinic exam. I've had 15+ different blood tests done...all norm but none of those check for ALS, in addition to normal results from the usual grip, push and walk neuro checks. I have no apparent weakness, although the lack of sleep has my hands and legs feeling weaker/tighter and a little less nimble. I also have a restless sensation in my legs. I can't get in with the neuro until 2 weeks and don't know how I will keep my sanity. I've been stress vomiting and lost 8 lbs, my appetite is shot and feeling weaker as the days go by. I've got it in my mind that the EMG is the only way to rule out ALS but I'm petrified that all this twitching/buzzing will light it up like a Xmas tree...then pow I'm a goner. My wife is also freaking out because I'm thinking I've got a death sentance disease. Does this sound like BFS and extreme anxiety? Has anyone out there gotten this mentally freaked? Sorry for the long post but I'm exhausted and rambling.
/Da Coach
 
Yes this sounds like BFS. I feel as if you have written my story. You are I think the first one (at least that I remember) that has explained the "electrical" sensation and I have that in my right leg all the time.

My neuro also said that buzzing, tingling, etc... does not go with ALS.

Your symptoms couldn't be more identical to mine and mine started in Jan with panic attacks. I also had the same thing happen 12 years ago (panic attacks) and I twitched then too. The difference is I had the net to look up my symptoms and did not then.

I have had one normal EMG on my right leg and my right leg is the most affected.

Go to your neuro appointment and take heart that you have no weakness, atrophy; just twitching and you sound just like all of us.

My pain in the butt this week is leg pains. I had them in March and they went away and now they are back. It's a dull ache with some sharp shooting pains sometimes and I think it's from major muscle tension for almost 9 months straight.

Hang in there and visit often!!

Karen
 
Hiya, Coach:

You asked whether anyone out here has gotten as stressed as you? Ha, I think we ALL have...and we got past it, after time passed. Every single one of your symptoms sounds familiar. At first, before I accepted that this is a benign (if annoying) condition, I kept self-monitoring, thinking I was experiencing loss of muscle control. My hands just felt, well, weird. My knees wobbled. One leg was what you'd call restless. I had buzzing, twitching, shaking, trembling, you name it. And thanks to this board, I discovered that I was not alone. And neither are you!

It really is too bad that more general practitioners don't know about BFS, because if I had had the benefit of this board's wisdom at the beginning of my symptoms, I might have lessened the anxiety I went through. Yes, we really DO know how you feel.

Keep us informed. I think you won't get worse, and I hope you'll get better, soon! (Same to all the rest of you guys!)

--alyLeoNCali
 
Hi Coach,

Same here. I get buzzing quite often. It went away for awhile but recently returned in my right foot and tingling in both feet. My whole insides feel like they are vibrating. I actually felt yesterday that for a little while it acutally stopped, I felt no vibrating sensations at all internally, now that was a strange feeling!

I think the way our symptoms pop up so quickly, spread, change directions and areas and most of the time widely spread plus our vibrating/buzzing sensations pretty much clears us of the three letter word. It is really crazy when it first starts and we all hit rough spots along the way, but this board is great to keeping you from really going down the dark road. Have you read the BFS in a nutshell? It's amazing how much of what we say we are experiencing is in that posting.

It does sound like BFS to me and I share most of the same symptoms. And as for the mental anxiety,,please..I'm surprised my hubby has not had me committed. I'm anxious most days about it now, but in the beginning I was having full blown panic attacks, consuming most every thought walking around in a fog. Sound familiar?

Hang in there, you'll get through this! :)
 
Thanks for your quick replys! I already feel a little better (mentaly & emotionally) knowing that I'm not alone in this thing. I have been constantly obsessing with practicing/checking to see if I'm losing strength/coordination. Hopefully I'll sleep better tonight. Thanks again,
Da Coach
 
I have been where you are 100 %. I lost 25 lbs in 3 weeks (and I wasn't overweight either) untill I looked as atrophied as possible and couldn't function in any way. It was like why bother, I've got no future. Trust us, this will pass. It's just the initial shock you're feeling now. I sometimes twitch over 100 times/minute and it's been 2 relentless years. Tingling and other sensations are NOT symptoms of als. Most people who twitch w/als (not everyone even twitches) don't even notice it. Twitching without weakness is NOT consistant w/als either. Perceived weakness or restless legs (which I had for 6 years prior to twitching) is not the weakness they talk about w/als. Cramps are common w/BFS. Also, my twitches showed up on the emg-that means nothing. You already know you twitch. There are other things they look for on the emg that can't be caused by your anxiety or twitches. Hang in there!!! You will be ok!!!!!!!!!!!!
 
Im glad you found this website sooner than i did. It took me about 3mths before i had even heard of BFS. In that time i dumped my girlfriend of 5yrs so she would'nt pity me because i thought i had MND. Thats the worse thing before you can educate yourself about twitching and cramping you become one helluva nervous anxious wreck. And then 6mths down the line you regret you acted in the way you did to these symptons. Good luck, just try to not let the twitching play on your mind and keep busy. When you sit in the chair you will be counting how many times you twitch in a minute and then seeing if your left bicep is smaller than your right bicep and then checking every other *beep* muscle in your body.
 
Hi Coach,

I'm 36 and I've been pretty much in the same boat as you for the past 6 weeks. I'm still doing the feats of strength stuff and doing nothing but making myself sore, but for some reason I can't stop doing that. I had a good appointment with my GP last week, which helped a lot. The best thing I found is this website, which has been and remains a tremendous help. I can't put into words how much this site has helped. Another thing I've noticed, pretty much everyone I talk to about my twitches either has or has had some form of muscle twitches. The differences are they are not as stressed out as I am and did not bother to look up twitches on the Internet like I did.

Jerry
 
Welcome, and keep this board handy on your PC while you await your neuro appt.

Your symptoms are very familiar to all of us here. The mental stress from these symtpoms is crazy. You are 38, and mid 20s to mid 30s is the prime time for 'anxiety' to strike. Please read up on anxiety as much as you can. I don't know why, but strange physical symptoms from anxiety tend to strike at this point of our lives....even when mentally we might not feel anxious.

Read through this board to catch up--and trust me, you will feel more confident. Once you get your EMG, you will be even more confident, and you'll be able to 'let go' of the worry and simply get down to business living with these strange symptoms. As your worry diminishes, so will your symptoms.

This is the strangest experience 'physically' that I've ever had. I'm one year into this ordeal, and my twitching is finally subsided to the point where I feel 'normal' again. It might take a LOT of time, but once you get a clean neuro report, you have to force yourself to believe that, no matter how strange these symptoms feel (buzzing and twitching and fatigue)--it is NOT going to kill you, nor will it change your quality of life if you don't allow it to.

None of us knows for sure what causes this stuff--but there are many ideas on this board, and for certain, stress seems to make the symptoms worse.

Have fun reading--and relax! We will pull you through until your neuro exam!!

Amy
 

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