NEW MENBER WITH TWITCHES/FEARS

BFS Online Support Group

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NEW MENBER WITH TWITCHES/FEARS

Postby SCOTT on August 30th, 2002, 9:51 am

I STARTED WITH FASCICULATIONS ALL OVER ABOUT 5 MONTHS AGO.
WENT TO DR. DID BLOOD WORK-NORMAL
WENT TO NEURO DID EXAM AND EMG STUDY- ALL NORMAL.
THAT WAS 3 MONTHS AGO AND I AM DOING BETTER BUT STILL TWITCH IN MY LOWER LEGS AND SOMETIMES FEET CONSTANTLT.
ALL OF UPPER BODY TWITCHES ARE ALMOST GONE.
NO WEAKNESS AT ALL/ WORKOUT 5 TIMES PER WEEK.
EVEN AFTER 5 MONTHS I STILL HAVE FEARS OF ALS.
MY DR. SAID EMG WOULD FIND A PROBLEM IF I HAD ONE, ALSO SAID TWITCHING W/OUT WEAKNESS IS ALWAYS NOT ALS.
HE SAID BY THE TIME YOU HAVE FASCICS WITH ALS YOU WILL SEE WEAKNESS AND IT WILL GET NOTHING BUT WORSE OVER TIME.
DO ANYONE ELSE HAVE TWITCHES ALL THE TIME AFTER AS LONG AS 5 MONTHS ?
CAN THESE REALLY BE BENIGN?
WILL THEY EVER STOP ALL TOGETHER?

THANK YOU , I JUST NEED MORE REASSURANCE FROM OTHERS WITH BFS
SCOTT
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Postby Arron on August 30th, 2002, 2:36 pm

Hey Scott, calm down, sit back, take a deep breath and relax. You do NOT have ALs or even show ANY signs of ALS.

What your dostor said was true. Let's look back and some cold hard facts so you can be more at ease.

WENT TO DR. DID BLOOD WORK-NORMAL
That is great. Can't ask for anything better than that.

WENT TO NEURO DID EXAM AND EMG STUDY- ALL NORMAL.
That is great and is the deciding factor. The cold facts are that a clean EMG ALWAYS means NO ALS, period! There's no greay area there. It is cut and dry and 100% accurate.

THAT WAS 3 MONTHS AGO AND I AM DOING BETTER BUT STILL TWITCH IN MY LOWER LEGS AND SOMETIMES FEET CONSTANTLT.
ALL OF UPPER BODY TWITCHES ARE ALMOST GONE.
NO WEAKNESS AT ALL/ WORKOUT 5 TIMES PER WEEK.
That's great. You see, ALS does not and can not be there one day and gone the next. You can NOT get better with ALS. Once a muscle's nerve signal gets disconnected by ALS, it can NOT repair itself and reconnect. Your symptoms have gotten better over time in some areas of your body. That is pretty much impossible with ALS.

MY DR. SAID EMG WOULD FIND A PROBLEM IF I HAD ONE, ALSO SAID TWITCHING W/OUT WEAKNESS IS ALWAYS NOT ALS.
HE SAID BY THE TIME YOU HAVE FASCICS WITH ALS YOU WILL SEE WEAKNESS AND IT WILL GET NOTHING BUT WORSE OVER TIME
He is 100% correct in everything he said and right on the money. Good doctor! Listen to him, he sounds like a good one... this is his profession!

DO ANYONE ELSE HAVE TWITCHES ALL THE TIME AFTER AS LONG AS 5 MONTHS ?
Of course! I have had it myself almost 2 years now. MANY other that post from time to time have had it for 10 and over 20 years with NO problems other than the annoyance of the "typical" FS problems that come with it, such as twitching (obviously), muscle soreness, occasional cramping, tremors, fatigue or the feeling of being totally "drained" (but no REAL weakness), buzzing or vibrating muscles, sore limbs, exercise intolerance and many more "common" symptoms that come and go at randome BUT are ALL benign and can NOT "turn into" ALS.

CAN THESE REALLY BE BENIGN? Yep.

WILL THEY EVER STOP ALL TOGETHER?
Maybe, maybe not. BFS symptoms are amplified by stress, anxiety, being tired or run down, they come-on strong when you are sick. Sometimes they tend to go away and in some people have gone away and not come back, while other's twitch 24/7 all over their bodies. Sometimes you'll have bad days where you ache, twitch and just feel like you're draggin' you ass all day and have no energy and other times you have grea days where you hardly notice anything at all. It can stay like that for weeks, months and years or it can come back by the week or day. It just depends. BFS is a mysterious syndrome and it reacts differently to different people. There are no "known" meds that stop it, although some try suppliments and dietary changes and say that have gotten relief, but I personally attest that what they have going-on is a placebo effect and their symptoms would have subsided anyway, without the supplimants at all. That's just my opinion and I could be wrong... no, no... I'm never wrong :-) Anyway, Scott, you are fine. You certainly do NOT have ALS or anything that even remotely sounds like ALS, so go grab a nice cold one, sit back, relax and enjoy the day and try not to pay attention to the twitches... they are like the noisey kids next door, when you ignore them, you don't seem to notice them as much :-)
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Sounds familiar

Postby RaeKwon on September 2nd, 2002, 5:38 pm

That pretty much sums it up for me too Scott.

I have had the twitching for nearly 6 months. The ones all over are nearly gone but I still get them in my calf muscles a bit. I remember getting twitches in my lower legs about 4 or 5 years ago. With no internet or ALS info to throw me into a frenzy, they went away after a couple of weeks. Ignorance was bliss. This time around they hung around for about 3 months and then virtually went away again. That was until I mention to the doctor that "a while back I had these twitches". He mentioned ALS and BOOM! That night my twitches were back! 1000's of them! Fortunately I was led to this site (Thank you God!) and my fears have been calmed. So now, my all over twitches have nearly gone. The thing that makes me mad is that if the doctor hadn't mentioned ALS, I'm sure I wouldn't have any twitches now. That like twice in the past, they would have come and gone.

Oh well - If anything, this syndrome has made me recognise just how precious our health is, and how thankful we should be that we are o.k.
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Postby Arron on September 3rd, 2002, 11:37 pm

More idiot doctors have ruined months and years of people's lives by spewing-out false and unjustified information like that and they should be kicked in the *beep* head for it. Gee, do I seem mad about misinformation being freely given oit? Hell yes! It was because of some outdated medical manuals that caused me to lose almost 2 years of my life being so scared about having ALS and not believing any of my doctors (who quite the opposite thought it was NOT ALS), but how could the medical booke these doctors learned from and studied be wrong? They are though and I hear about uncompassionate doctors just blurting-out those three letters A.L.S. so many times and it has caused SO much damage to so many nice people. If there is no weakness, no loss of muscle control or any other major symptome consistent with ALS, then ALL doctors should keep their *beep* mouth's shut and show a little compassion by not scaring the hell out of their patients by saying ALS. I almost lost my job because I was so scared and out of control with raw fears. I couldn't function as a human being, couldn't eat, couldn't sleep, couldn't get out of bed and didn't want to do anything but just get it over with and die. Sometimes I thing doctors separate themselves so far from their patients, they lose track that WE are people with lives, wives, children, mom's, dad's and so on and when I hear about another doctor nongilontly blurting out ALS to someone with no foundation, it REALLY *beep* me off! Gee, can you tell? :-) Their lack of compassion ruins people's lives and they should be more responsible than that.
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battling wi the twitches

Postby izzie on February 17th, 2003, 6:24 pm

I read Scotts story wi interest and relief and I hope you are coping ok Scott.
I am horrified by Aarons experience wi medics and I am sorry that you had that bad time Aaron. I am a doctor and I will never ever underestimate the power of anxiety and fear and how it can cripple you. I thought I was going crazy and maybe I will feel like that again but this site has helped me so much I am able to relax despite the twitches. I find all the messages very helpful and keep my spirits up
thank you all
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battling wi the twitches

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