Twitching and terrifed

[Karen]

I've been twitching all over now for about 11 months. Sometimes you can see the skin move, like in my hands, feet and face. It started december 99' last year, now being september 13 2000. Since it started I've had an MRI of the head and spine 3 emgs and nerve conduction studies - one performed by a different neuro (second opinion). My last emg and NCS was 3 weeks ago. Every test has come back normal, including physical examinations by the two neurologists. Both said BFS. I don't have any weakness. My neurologist is very well re-spected and I don't have any wish to see another one but it's not getting any better and I'm just terrified that I have ALS. I'm 31 years old with a husband and a 2 year old daugther that I absolutely adore and the thought of maybe having ALS and thus not being able to see her grow up is breaking my heart, I'm getting to the stage where I'm crying alot, thinking that I've only got so much time left. I know this sounds completely melo-dramatic but If it was just me I had to worry about then it would be a different story, I probably wouldn't care. I just really need some answers because I feel like my life has stopped due to fear of this disease. As I said before I really respect my neurologist but I don't feel comfortable asking him lots of questions. How long after twitching starts does it take to show up on an EMG if you have ALS? Please help.
                   Karen

[A question from Kimberly]

Have any of you ever had a twitch in a specific area that has lasted more than a day?  I've twitched on and off for two years. I thought it was getting better, but yesterday my the right side of my hand started twitching and it is still going on.  It twitches about twice every thirty seconds or so.  The twitch causes my pinkie finger to move.  This scares me.  I hate these twitches!!  Has anyone experienced similiar symptoms?
Thanks!

[anon]

AMEN!!!!!!!!!!

[Lynne]

After reading all your entries, I cannot tell you how much better I feel. I have been having twitches all over my body for over a year. I never went to the Doctor because I was so scared I had ALS. I've never had any other symptoms, but medical books NEVER mention benign twitches. I never thought so many other people had these twitches. I'm a very nervous person, I've had panic attacks and I work in the health care field. I started having these twitches after reading about ALS. I think knowing too much can be a bad thing, for someone with my personality. Thanks to everyone. Next time I start twitching, I can put it out of my mind much easier. I thank God everyday for my health, and pray for those who are sick.  What a wonderful day it will be when they finally have a cure for all of our illnesses.

[Charlie Cat]

Muscle twitching can be related to "Restless Leg Syndrome" which tends to go with fibromyalgia and Chronic Fatigue Syndrome.  Has your doc. tested you for tender points?  The twitching is annoying.  Try Klonopin at night and a muscle relaxer like Baclofen 3 x day.  You might find relief.  Also, since I have both of these diseases and myofascial pain syndrome I use a TENS Unit and often times I put it on my legs to stop the twitching.  Talk to your Doctor about FM/CFIDS, restless leg syndrome and medication.  Yes, your legs will become very tired if you have Chronic Fatigue;  they'll feel like they belong to an elephant instead of you.  Flare ups come and go.  Sometimes you will stay in a flare up for years if you don't get help.  Med's will help.

Good luck.

[chris]

Candace,

I can relate to all of your anxieties and frustrations. I was 24 when I began twitching <everywhere> 5 yrs ago. I too went through a period of dispair but finally did make a conscious effort to live with it because it didn't appear to be causing any other health problems. Oh, and it helped that I didn't know a thing about ALS.

Since the onset of my fasciculations came in the very early days of the internet's use (1995), I never thought to research the symptoms. Curious one day in 1997, I searched the web for 'muscle twitching'. I got all kinds of hits for ALS which scared me to death but on the same search I found a link to Mass Generals Neuro Message Board where they have a 'Neuromuscular' forum. http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics. If you haven't beeen there, you should definitely check it out as most everyone in there has the identical symptoms and can re-assure you that these are very much benign twitches.

I hope this can relieve some of your anxiety. Feel free to email me if you need someone to talk to about it. ***@****

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.