Anxious about ALS after Twitching

StephG22

Well-known member
Hi. This is my first post. I am very scared of als because I had a friend w/ it (in her 20's). I started twitching 2 years ago (I think - I didn't think much of it so I never payed close attention). At the time I was 3 months pregnant. one year ago I looked up twitching on the internet and totally lost my mind. I quickly lost 15 lbs due to worry waiting for my neuro exam. I couldn't wait, so I went to the er. My neuro exam was normal except for brisk reflexes (which I still have). ct of brain was normal. Next day emg of left side of body showed fasics and slowed sensory conductions (due to cold hands?) & borderline left median nerve velocities (had tendonitis there 2 years prior). Rest was normal. I was elated. That didn't last long. The twitching occured in every muscle in my body every few seconds 24/7. I saw another neuro. exam & emg were within normal limits. All bloodwork is normal. Again I was elated, again it didn't last long. I recently read of a woman who had twitching first and I lost it again.
I have no profound weakness (just rubbery legs) or atrophy although I have really skinny calves which is where most twitching occurs. I seem to hit things w/my feet a lot. Today I looked at my calves and the muscles (aside from the twitching) are constantly moving very slowly like worms under the skin. it never stops - not even for a second. This has me more scared than the twitches! I also get occas. spasms. I can't get out of this dark place. I feel like I am waiting to die.
 
stephanie,

I'm with Joe, you've had your sxs far to long (without progression) for it to be anything serious. Also, that strange movement under the skin that you describe, I have also. It isn't really a twitch.

Good luck to you,

Gary
 
I remember before getting my emg reading a story about a woman who had 2 normal emg's but was still so freaked she couldn't function. I thought to myself how silly it was that she was wasting her life away worrying about something she doesn't have and how happy I'd be to have 2 normal emg's. I guess I'm just like her now waiting for the weakness to show up and wasting my life away with worries and anxieties. On the days when I'm being rational I could just kick myself that I'm not taking advantage of my wonderful life. I think my real weakness is my mind!
 
StephG22,

Don't feel alone in regards to not believing test results. I would venture to guess that the majority of the members of this board (including myself), have done the exact same thing. I had three emgs before finally allowing myself to believe that I wasn't dying. The anxiety associated with BFS is one of the hardest things to overcome because you can't get away from the trigger (twitches). I think time is the best treatment for this syndrome. As the days go by and you don't lose function, your anxiety will start to fade. Hang in there, and really focus on the positive test results you've received.

Gary
 
Thanks for the support. This website has helped me emensly. Every day is a struggle, but I am trying to stay positive. It helps me to donate $ to find a cure for als. Jennifer Estes' sisters have a good foundation apparently where the most $ goes to research. I know they have a website I just have to find it.
 
StephG22,

While you heart is in the right place, I don't think I would go visiting anyone's als site. It has been my experience that any sites that have to do with als really lead to anxiety. That is just my opinion.

Take care,

Gary
 
I agree. I will have someone else go on the website and get me only the info I want. I will never again visit any website other than this. I have learned my lesson!
 
StephG22-

Especially with the experience with your friend that you mention, I'd strongly encourage you to seek out counseling, preferably with a qualified behavioral therapist who specializes in health-related OCD (obsessive-compulsive disorders). In this world of sensationalized healthcare and negative stigmas attached to the world of mental health and associated treatments, I'm sure that sounds overly harsh and over-the-top. It is not. In that you have encountered a rare personal experience with a friend who has suffered from this devastating illness, and now find yourself "waiting to die" from your own course of symptoms, you are undergoing a legitimate mental trauma from which therapy and counseling are the best known and reliable techniques for a full recovery.

In classic health-related OCD, your mind's most insticntive and palatable recovery mechanism is to drown yourself in a world of comfort and find "anchors of redemption" that will provide you temporary comfort and peace of mind. That is GOOD, and shouldn't be resisted, but it's likely going to take more substantive measures for you to start experiencing TRUE healing and recovery. Some classic OCD strategies emphasize staring your worst fears head on, absorbing them, and gradually reducing the fear level through familiarity (your mind becomes accustomed to the fear triggers and no longer reacts so strongly to them). More modern behavioral techniques are a little less dramatic (for instance, try making yourself twitch, but not just pointing out your twitches as they occur, in a given area of your body for someone else...it's really pretty hard!) but produce dramatic results...whatever the course you pursue, this is very much akin to taking a specific medicine for a certain condition. If there was a cure for BFS that came in a tablet, I hope you've read by now in here that every one of us would be on it. Therapy and counseling IS the little tablet for traumatic mental experiences related to our health or longevity.

I fought this hard when it was first recommended to me. I wish I hadn't...do yourself a favor and seek out some counseling, even if you feel "OK" right now - you will likely shorten your road to true long-term recovery, and minimize the difficulty of that process for yourself.

I hope that helps! Smile and enjoy your day!

JG
 
A female in her 20's? Do you realize how rare that is?

Gosh, can someone please post about people over age 50 and 60 and 70 for a change? I could use some reassurances here.

peg
 

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