Widespread Twitching: Relax & Dont Worry!

Highlights Only
J

jsageurge

Well-known member
Henk - First of all, relax! Get ALS out of your mind. I've given a lot of thought to this question and my twitching EXACTLY matches yours (including starting in the eyelid). ALS twitching will NEVER start in the eyelid. ALS twitching will NEVER start above the ear (I have that one too). Your widespread twitching could be benign or it could be due to a metabolic disorder, thyroid disorder, autoimmune disorder or other treatable condition (see recent post by CosmicVisitor on this).

Doctor's will take varying approaches. Some will cover all bases (or their a$$es) and order every test possible. You might encounter a doctor who is a "wise sage" (see Dr. Hill's article in the aboutbfs articles) who will tell you that you do not need an EMG. If they do, TRUST them. They may do an EMG to put your mind at rest. From what I can see, this does not work either!!! There are many people here who had EMG's and still worry!!!

The reason a doctor will NEVER say that you don't have ALS is because it is impossible to say. Anyone could have ALS. Even with a confirmed BFS diagnosis, you still go back to having the same odds as anyone else in the general public. Personally though, I think doctors should make this distinction, and tell you that ALS NEVER presents with the kind of twitching that you are describing. Keep your peace of mind.

Cheers,
-Bill
 
Henk,

I totally agree with Bill. Bodywide twitches are never indicative of ALS, my neuro confirmed that, also the fact that it started in your eyelid confirms that. The doctor who referred you to a neuro is probably doing what they feel is best to alleviate your fears. My GP did not want to refer me, but I told him I wanted to go and get all the tests and be sure, for my own piece of mind. I also have a "think the worst" personality, always have. I am so desparately trying to kick that habit. Plus the GP doctor is not a specialist in this field so as Bill indicated, they like to cover the behinds.... Relax and rest assured. As Bill also indicated, there are many causes of twitching, such as thyroid, etc., which are completely treatable and there are also more benign reasons. Think postive, find ways to relieve your stress and stick with this Board. It is a tremendous source of energy and positive thinking and support.

Google Wikipedia and click on the topic "benign fasciculation syndrome". I think you will find reassurance in reading it. I also think Diego4Life posted the link in a recent post he did as well.
 
Henk,

The first thing my neuro said when I told her what I thought I had was to stay off the internet. There is alot of misinformation out there and some very dated stuff. Think about it, just about anyone can put something out on the web these days.

Basso, I'm over it. Was having a very symptomatic day yesterday after being virtually twitch-free on Friday. :D) The other post I was referring to when I said you were being hard on me was the one where you indicated you forgot to cover your eyes - all in fun.

Henk, trust in your doctors and the people on this Board. Body-wide twitching is NOT indicative of ALS.
 
Hi Henk,

I hope you are fine and feeling a little bit better after visiting this forum. I did 14 month ago when my first twitch started. You are right that twitches all over your body are not indicative of ALS. But having these twitches can mean many things. So it is good to see a neuro who can do some tests. After 12 month (!) they discovered that I had a low vitamine B12 and this could cause the fasciculations. But my neuro also told me that it could be low B12 vitamine (which certainly explains some of my complaints) together with BFS. However prepare yourself that BFS in The Netherlands is not usual. They just will tell you benign but do not talk about a syndrom. Do you have other symtoms? You talked about fasciculations but if you have no weakness at all, you certainly do not have to worry.
Verder advies: lees niets meer over ALS op het internet en blijf lezen in dit forum. Het zal je kracht geven om de angst te overwinnen. Angst is een vervelende klacht naast de spiertrekkingen. Je kunt me altijd mailen.

Henk, Take care, Eve.
 
Thanks to you guys, i am feeling much better!

My mom was having her birthday yesterday and i was enjoying the party instead of that i worried!!
I was feeling the twitches but i didnt give them any attention!
If i hadn't found this board i was really afraid at the moment!

Thank you all for this!!!

PS can i drink coffee like i used to or does this indeed affects the twitching?

@ Eve : Hee nog een Nederlander op het forum!
Ik ben ook gestopt met het lezen als dingen over ALS. Probeer er zo min mogelijk op te letten, maar dat is nogal een moeilijke opgave!

Regards Henk
 
hmm that doesnt last long before my next anxiety.

I have noticed that in my leg above my knee there is a constant twitch. This is twitching for around 1 hour now with other twichtes around my body continues to come and go, but this one doesnt stops!

I am in panic again!!!

Sorry i cant help it!!!

:crying:
 
Henk, like you, I have not been to a neurologist yet either. I have some insurance problems and I won't be able to go until the new year starts. So, naturally I have done a lot of web research and reading people's posts to see if their symptoms match mine.

I also came across the symptoms on this site in frequently asked questions that exactly describes what my symptoms are. At this point I am 99% positive that I have BFS based on how this reads below and what I have read on the message boards. I have no muscle weakness, no atrophy, and my twitches travel all over my body. They are primarily in my calves and feet (which is a classic symptom) but on some days and nights they are everywhere, hands, upper arms, thighs, neck, lip, back, etc.!

======================================




Here is what it says:

Common symptoms of BFS are frequent muscle twitches, generalized fatigue, pins and needles sensations, migrating numbness, muscle cramping and/or spasms in the affected areas (my comment: usually the feet and calves but can be anywhere), muscle aches and stiffness, exercise intolerance, headaches, and itchiness.Clinically some patients have mild increases in creatine kinase. Muscle biopsy may show mild neurogenic changes. Electrodiagnostic studies show peripheral nerve hyperexcitability.Often the symptoms will get worse at night, or during periods or sickness or viral infections, stress, or overexertion. (My comment: however, there are days when twitching will occurr all day for no apparent reason.)Many people experiencing these symptoms fear they may have ALS or MS. A simple clinical rule is that fasciculations in relaxed muscle are NEVER (emphasis mine) indicative of motor system disease unless there is an associated weakness, atrophy, or reflex change. ========================================

In other words, if you go to a neurologist and don't perform well on many of the tests PLUS you have a localized twitch in the same muscle where there is CLINICAL weakness or atrophy, then it is possible that you might have something else besides BFS although it certainly does not have to be ALS. When I speak of clinic weakness, I'm not talking about the feeling of fatigue and stiffness that we all get in our muscles because they twitch all of the time. Clinical weakness would be something like not being able to hold a pencil or not being able to pick up a foot to get up the stairs.

From the Yale NeuroMuscular Dept: The median age of onset for ALS is 55-66. The primary symptom of ALS is progressive weakness.

Even though the folks on this board can assure you all day and night that you don't have ALS, you MUST go to a neurologist as soon as possible to get a diagnosis or you will twitch more and more just due to the stress of worrying about it! Make the appointment right away for your own sanity!

Hopefully you and I both will get a benign diagnosis! The more you worry and stress over this, the more you are going to twitch. If you think about a muscle long enough, wondering if it feels odd, it WILL start twitching and it definitely WILL begin to feel odd or sore or stiff or tingly (I know because I do it myself). I've noticed that if I watch a funny movie or play with my kids it mysteriously goes away ;)

We can do a lot with our minds, including focusing all our attention on what we DON'T WANT to happen, which will likely bring on a lot of physical distress in addition to the mental and emotional pain. Focus on what you DO want to happen which is to be healthy and strong. I don't mean to sound trite, but try to do something that makes you laugh, be around healthy people (even if they are little kids) and laugh with them, exercise enough to clear your mind, and stay positive. That is better medicine than a tranquilizer or anti-depressant pill and will go a long way towards calming your muscles and your mind. By the way, this is advice I give myself, too, because I do the same thing you are doing. It's very easy to start combing all of the message boards trying to find reassurance and then end up in bad shape because you read what someone else has written. Take a break from reading the boards and hanging out where you do nothing but read medical symptoms. You've heard of medical students who think they are dying from every disease they learn about, haven't you? If you study it, focus on it, you will begin to feel and experience it. Not the real disease, but the symptoms of the disease.

I am my own worst enemy quite often.
Cheers! :D)
 
Hi 1goodnana.

Thanks for the long and supportive post!
I hope i can set my mind on other thing but it is really hard for me!
With every new sympton i get, like the stiffness/no feeling in my indexfinger or cramps in the calves i freak out and i only think of ALS or another progressive neuro disease.

Regards Henk
 
Hi Henk,

I know how you feel. When I got the twitches last year at first, I was totally freaked out. I could barely get through my days. Then the twitches went away for 7 months? I don't know why, but I was sure glad.

Guess what? They are back, and this time with major pain in my hands (both of them.) You cannot go on this stressed out for so long. You have to try and relax a little. You will do worse harm to yourself from the constant stress. I do not advocate the use of tranquilizers, BUT...my brother ( who is a Doctor-unfortunately not a neuro ) says that they serve a wonderful purpose when used as needed. I think for you right now until you see your neuro is the right time for a little help, just to relax.

Keep writing, the wonderful people on this site will help you. Good luck.

ristinaL91
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top