twitching

[pleasehelpveryworried]

Hi, I want to ask a very important question, and very much appreciate any help. In May of 2005 (10 months ago) I was having problems with one of my legs tingling and feeling kind of weird. Well, dummy me! I went on the internet and put in numbness on a medical site and don't you know ALS popped up! I got so freaked out reading about all the signs that I just started crying. This went on. I went to my regular doctor and told her about what happened she scolded me for going on the internet! She had me walk in a straight line, close my eyes and touch my nose with my forfinger, and a few other test. She said if I had a nurological problem, it would start with failing a test or muscle weakness. She suggested I go on a depression drug, but I will not take those. I am (or used to be) very happy go lucky until I found out about this disease. I then thought okay I know I have this disease. Then my brother told me that if you think long enough about having it, you will get it....NO HELP FROM HIM! My leg stopped doing Then, I got my wisdom teeth removed in Aug. (they were extremely impacted). A little before then and now a lot after then my face twictches. It seems to twitch several times a day, lasting for about 1-8 seconds. Sometimes it does it once and sometimes it twitches 8 times. I also have twitching in my arms and legs but not as often as in my face. I keep thinking now that I have bulbar als because of this. I have no other problems and have read every post on this site! I am a 31 healthy female besides this freaking out about ALS.I just want an opinion! THANKS!

[CCF-Neuro-M.D.-PW]

Twitching in the absence of muscle weakness and wasting is unlikely to be ALS. Twitching is very common in the general population and is usually benign. ALS is a very rare disease. Other causes of twitching include cold weather, exercise, certain medications, an overactive throid gland, nerve compression or spinal cord problems, and a benign syndrome with or without cramps. Widespread twitches without other abnormalities is also suggestive of a benign form.

Good luck

[radrhatr]

You need to visit the website www.aboutbfs.com and read the post BFS in a Nutshell. Then read through some of the posts from people who are/have been just as afraid of ALS as your are. There are a lot of twitchers out there who have gone through exactly what you are going through. It took me about a year to finally recognize that I have a classic case of BFS because twitching wasn't my most presenting symptom. I have a constant shaky, ratchety feeling that is my most bothersome feeling. You will receive a lot of reassurance there that will hopefully ease your mind and fears. I know it helped me eventually come to terms with the fact that what I have is, while very annoying, it isn't going to kill me. Hope this helps.

[always feraful]

i know how you feel i have posted under always fearful , that will tell you what i have been going through, so i know how you feel , i am like you i am scared to death and don't know what to do. i would love to talk more with you because it does help when you have someone to talk to that will listen . email me dp5187@ msn.com. thanks

[StorminNormin]

Best thing to do if you are still concerned is to see a Neurologist.  They will conduct the exam and tests, such as an EMG, that will hopefully put your mind at ease.  I had a similar experience with twitching that seemed to come out of nowhere and it was the tests run by the Neurologist that have answered any concerns I had as to what was going on.

[motheroftwo]

Numbness is not a typical symptom of ALS, I should know, Ive had als 6 yrs this coming June.

Most people with als first notice weakness in a limb, difficulty walking or difficulty with arms/hands movement (limb onset) or slurd speech/swallowing prob's (bulbar onset).

Good luck.

[colasteve]

im a 34 y/o male. ive had the same symptoms your having now for about 6 months. when they first appeared i read everything on the internet and convinced myself i had ms . i finally saw a neurologist and had blood work done and mri's. everthing was normal. the symptoms are not as severe now as when they first appeared. my doctor said they could go away.  dont take anti-depressants,dont let people tell you its in your head and stop  reading the internet for diagnosis. see a neurologist your comfortable with and see what it is. if it is als or ms,etc. you can deal with it. it may be nothing and slowly subside on its own. i know what your going through. take care, good luck and god bless.    please post your results if you can.

[motheroftwo]

Hi Geoff, I dont think I can add any further information, that hasn't already been said on the braintalk communities als forum, you have been posting on.

Sorry I cant be of more help.

[goldie lox]

I was wondering what your first symptoms were and how long after that were you diagnosed.

[motheroftwo]

Hi, first symptom was stiffness/weakness in left ankle June 2000, diagnosed in July 2001,  didn't visit the Dr until march 2001 as i had just given birth to my daughter the month prior (Feb).

[goldie lox]

I just want to tell you that my heart really goes out to you.I have been having problems with twitching all over and stiffness.I have had two normal emg and ncs and all I think about when I go for all these tests is my son.I hope you have peace and contentment in your life.Take care.

[PGA]

I too have severe stiffness / muscle aches
I twitch all over--butt, arms, legs, chest
My EMG was normal but I sware I have ALS
Whats your take on me and your own diagnosis so far ?

[goldie lox]

I have had a few  appts with my neurologist and as of now he has put me on valium for ten days to see if that helps with the twitching. I feel like I never get a straight answer from him.When I was having my emg done on my left arm my right arm was twitching which was not picked up on  my the emg.I asked him if he thougt it was BFS he really did not say either way.It is soooo frustrating !!!!!!I have twitching everywhere and stifness in legs and arms and neck.What is your story?

[PGA]

Dr's are frustrating-theyre all the same--no direct answers.
I too twitch in the arms , legs mostly, chest, neck, just off and on everyday for about 2-3 months
I've had a normal emg on my leg , but still don't know what's wrong. They say anxiety maybe ? I say thats weird + i have some slight leg weakness ---not bad though.  
I thought you said you had 2 emg's ?
What is BFS ?
HAve a good one. I am 37 what is your age If you don't mind
PGA

[PGA]

I have seen a neurologist for leg fatigue and twitches mostly in the legs but really all over my major muscles now--arms, chest, neck, stomach muscles etc.
I had a normal emg of the leg that was twitching the worst and he said " not even close " to ALS. Also nerve conduction was good and MRI of brain
I did take a .50 mg of ativan before my emg--could that really mess up the results ? That's not much --I just couldn't take the test without getting really nervous.
Would blood work for ALT enzyme levels reveal ALS _ degenerative muscle tissue too--I had that done.
Please comment
PGA

[radrhatr]

BFS is benign fasciculation syndrome. It is twitching (among a host of other common symptoms) that has a benign origin. Visit www.aboutbfs.com and read BFS in a Nutshell. Your EMG was clean. You should receive some reassurance after reading the posts at this site. I am carolmerrill over there. Hope this helps.

[PGA]

Thanks Carol
What do you mean by Carol Merill over there ?
What is your story, involvement with this site ?
pga

[radrhatr]

My screen name on the bfs forum is carolmerrill. To make a long story short, I have had undiagnosed symptoms now for two years. Shaky, internal tremor feelings, perceived weakness in my arms (but I absolutely have full strength), buzzing vibrating sensations in various parts of my body, feeling of crampy muscles in my left arm, left ring finger and pinky feel clumsy, twitching, etc. just to name a few of the most significant symptoms. I have finally put it all together that it came on after a respiratory virus I had back in February of 2004 (which is a common trigger for bfs). When I first started experiencing symptoms, I too freaked out about MS/ALS/Parkinsons. I have seen two GPs, two neurologists, an endocrinologist, and a rheumatologist. Had a whole slew of tests--EMG/NCV, lumbar puncture, EEG, MRI's, bloodwork, heavy metal--all coming back within normal limits. It was only after I found the bfs forums and read through many of their posts that I realized that I think this is what I have. No doctor has diagnosed me with this (I quit going to doctors a year ago), but since my condition has not deteriorated, I really feel that this is what I have. Reading through the posts and asking questions there really has reassured me that I am going to be ok. While my symptoms are very annoying and have seriously impacted my mental state, I am very reassured that whatever it is that is going on with my body, it is not going to kill me. When I read stories that are similar to mine, I try to steer people to the website that has really helped me realize and cope with my symptoms in hopes that someone else will find some sense of peace there as well. I hope this helps.

[Reagenn]

I have a lot of the same symptoms that you described except an addition of constant jaw muscle discomfort.  Have you ever heard of someone with BFS or als that had one of the initial symptoms being jaw muscle discomfort? It is driving me crazy being constant. My dr gave me valium and it does seem to relieve the feeling (you know how your jaws tighten up when you eat a lemon or something sour)  some but comes back when I stop taking meds. My concern is a little heightened due to my dad passing away a few months back with bulbar onset als.  I've had one appt. with the MDA clinic but they couldn't tell me much. I have another in a couple of months. Just trying to figure this thing out.

[radrhatr]

Actually I did have some of that in the beginning. The respiratory virus caused fluid in my left ear, but no infection. A week to 10 days after the virus, I got a horrible pain on the left side of my neck that caused it to be very sore and stiff. Not shooting pains but more like I had wrenched my neck, but I hadn't. I had a soreness in the soft spot behind my left ear where the neck attaches to the head. That took about 3-4 weeks to subside and go away. It was soon after that I noticed the sensation you are talking about on my left side. It was like my salivary gland was cramping up. I also had some sensations of numbness on my left jaw up to my ear, but it wasn't really numb to the touch, if that makes sense. I still experience some of those sensations from time to time, but they have pretty much subsided. And when it comes back, it is not near to the level that it was before.

[Reagenn]

My symptoms started about 1 year ago after I had a bout with the Whooping cough. I could lay in bed and feel my muscles trembling all over and this coupled with the fasiculations just about drove me crazy. So, being familiar with als I stopped working out and started worrying. Then about 5 months ago the tight cheek muscles began. I'm just waiting for the other shoe to drop I guess....

[radrhatr]

Have you had an EMG? A clean EMG means no ALS. Also, from everything I have read, bulbar onset ALS has much more presenting symptoms than the twitching and tightness--that it is very obvious that you have difficulty swallowing and talking, slurred speech. I think if you read some of the posts on the bfs website you will see that you are not alone. Time is your friend here. If you have been experiencing symptoms for a year with no progression or worsening of your symptoms, it is probably not ALS. Also twitching without weakness or atrophy is not ALS. That is what I have learned from the bfs website--over and over and over--you hear the same stories.

[PGA]

Thanks so much for writing back to me
I'll spare you the details but say I'm worried and don't feel good either.
Good to hear from you-thanks again
PGA