Seeking some advice

First off I would like to say that I am praying for everyone on this message board.

I am new here. I needed somewhere to turn for advice. First off, I come from a long line of hypochondriacs. My background is 34 year old, still pretty active and athletic. About a year and a half ago, I started to experience numbness and tingling in my left hand (pinky and ring finger). Along with atrophy in muscle between thumb and pointer finger. I had an EMG done which determined I had a compressed ulnar nerve. I had surgery to repair. After a year, I have started to see some recovery. I am getting some trench back.

I have had some twitching in that hand over lat year. As recent as last week, I noticed I had some twitching in my muscle between my thumb and pointer finger on my other hand. I noticed this when I glanced over at my hand on my mouse at work. It is periodic right now. This led me back to the Internet to research twitching. Of course I started looking at ALS sites again, which led m to look at the arches of my foot. Of course I saw some twitching there as well. I have been to the neuro 5 or 6 times over the last year and they are both pretty confident that I don't have anything serious. I had MRI of brain and cervical spine last year as well. That came back clean. I cannot get the for out of my mind. The one thing that makes me feel a little better is that my strength has remained pretty good and returned somewhat in my surgically repaired arm. These diseases are pretty progressive and I'm not sure if strength would have come back.

I met with my neuro today. I had been asking for another EMG. After looking at me again, he said I wouldn't do anything. Don't waste your money now. He acknowledged that I had legitimate reason for concern based on twitching, but felt positive that everything is good. I am just having trouble accepting this.

Any thoughts?

Thanks

My thought is that you should listen and really hear your neuro.

Most times twitching is benign.

Why not give it another eight to twelve months? If you feel the same, go back to your doctor.

I don't think you have ALS. In ALS, twitching typically starts after clinical weakness and atrophy are noted.

Please get it out of your mind. Please stop fretting. Worrying usually exacerbates benign twitching and is so not worth it.

Elaine,

Thank you so much for taking the the time to respond. I am doing everything I can to relax and accept what he said. I do feel as if anything was wrong that I might have seen a more progressive sign of weakness.

In your internet searches you will discover information that not only includes symptoms that accompany ALS (such as twitching), but also a host of information about symptoms (e.g., numbness) or the progression the disease takes. Some of this information may entail symptoms that are consistent with a particular disease. Much more of it will present information about certain signs that would rule out a particular disease as being the cause of those same symptoms.

There are a myriad of causes for almost any symptom, but hypochondriacs tend to ignore all possible causes except the most dire. Likewise, they concentrate on the information gleaned from literature (typically accompanying symptoms) that are consistent with a disease and ignore the information on their condition that is inconsistent with the disease.

Elaine is right. The overwhelming majority of fasciculations (twitching) are idiopathic and attributable to Benign Fasciculation Syndrome. Worry about it only makes it worse and will cause you to spiral into greater anxiety and soon you'll be "finding" other "symptoms", increasing your anxiety... That's how hypochondria works.

I suggest you put the whole thing out of your mind. If you can't do that, then I'd suggest you concentrate your internet research on information that shows your condition is inconsistent with ALS. In other words, don't just latch onto information that shows you might have it, give equal time to information that shows you don't have it.

Great input, I really appreciate the feedback.

Do you think that what I have explained would lend credence to my worries?

I think you will keep worrying, until you decide to stop.

It's not easy to shift one's focus. It's like trying to kick cigarettes or junk food.
We know those things are bad for us, but we keep doing it.

It's easier to succeed if we replace bad habits with new good habits.
Exercise, writing, painting, volunteering are excellent antidotes to bad habits.

Please find something to do rather than worrying.

No worries. Like Elaine said and Annie's Phil said you do not have als. You are letting your fears get the better of you. Twitching in als is not until the late stages once the nerve and muscle are dying. There are stickies on this site that explain all this, read them and it will set the fears to rest.

You should stop searching the web and self diagnosing. Only drs can do that and they have told you that everything is fine. Go enjoy your life and go in peace.

God bless you guys and you taking time to respond to my worries. I guess the part that worries me is the twitching in my feet. I do feel somewhat relieved in that I have regained strength in the hand of the arm that I had surgery on. My understanding of ALS is that it is by progressive and does not get better.

Yes, once it starts it does not get better. Of course there are good days and bad but never better. Put this out of your mind. Relax, enjoy and move on to bigger and better things.

You are correct, muscle weakness caused by ALS does not improve. That's one of those pieces of information you should concentrate on that indicates you don't have ALS. Dwell on that, not the fasciculations.

I am back today because I have noticed some twitching in my tongue. It is twitching at rest, but calms down when I extend it all the way. Right when I was beginning to feel somewhat better, now this happens.

The culmination of symptoms has got me extremely worried.

Jksw15 said:

I am back today because I have noticed some twitching in my tongue. It is twitching at rest, but calms down when I extend it all the way. Right when I was beginning to feel somewhat better, now this happens.

The culmination of symptoms has got me extremely worried.

Click to expand...

Definitely not a sign of ALS or other MND for that matter.

With ALS (specifically Bulbar onset), your tongue twitches 24/7 no matter if it's at rest in your mouth or if you stick it out. It's a sign of the cranial nerves that nourish the muscles of the tongue dying and being disconnected from it. Furthermore, it loses bulk muscle mass and atrophies which means it shrinks in size and you cannot protrude it from your mouth and, you lose your ability to speak.

Conclusion, your "signs" you are describing above point AWAY from ALS. So, relax and enjoy your life.


NH

Thanks fir the response. Is that right? I have always heard and read that twitching in tongue was a sign. It has got me worried silly with everything else. I am a bundle of nerves, which I am certain does not help.

Jksw15 said:

Thanks fir the response. Is that right? I have always heard and read that twitching in tongue was a sign. It has got me worried silly with everything else. I am a bundle of nerves, which I am certain does not help.

Click to expand...

Yes, that is right. The way I described it to you is the way it is.
Tongue "twitching" and/or "tremors" is normal in healthy people. I had them when I was young and healthy.
It's different in people with ALS, though. As I told you on my previous post, the tongue loses bulk muscle mass, meaning that it literally shrinks (sometimes half its size); you can't stick it out, you can't touch your last upper molars with the tip of it, you can't move food around in your mouth with the tongue, and...the worst, you can't talk, you lose the ability to talk, you only can make sounds as if you were grunting (slurred speech).

It's worst that you can even imagine.

As I told you, for your own peace of mind, you do NOT have ALS and, you would do yourself and your nervousness a great favor putting this issue to rest and staying off the Internet.
Lastly, don't ever try to diagnose yourself as you may come to wrong conclusions since you are not an expert in Neuromuscular diseases and neither are we.

When I developed ALS, it was my expert Neurologist who performed several tests on myself and reached the conclusion I had ALS and made his diagnosis. I didn't get ALS diagnosis on an Internet forum.
I didn't come to these forums until I was diagnosed by that expert Neurologist and I was 100% sure of what disease I had. It was then when I came here for help and support from other people who had also been diagnosed with the same disease.


Regards,


NH