Back after 3 years

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Back after 3 years

Postby mjd83 on February 17th, 2017, 12:24 pm

Hey all,

I doubt anyone remembers me, but I first came here after the greatest terror of my life. I stumbled on ALS while looking up muscle fatique that I was experiencing (and it was just fatigue), saw that ALS involved twitching....and within an hour I started to notice twitching. After that I underwent the two most anxious weeks of my life. The twitch that started in the bicep spread out across my entire body and increased in intensity. I even started to get cramps in my legs at night (spasticity!) and noticed that might right leg would become extremely sensitive to touch. I got over the worst of the anxiety in the first two weeks when I was never able to find objective weakness despite nearly constant strength testing. However, I remained in the shadow of fear for nearly 6 months, and ended up seeing my primary care physician twice, who was unconcerned neurologically and tried to put me on anxiety meds. It really didn't end until I moved to another state and got so busy with my job, that I didn't have time to obsess over fasciculations, strength testing, etc. My twitching eventually decreased to a point that I barely ever even noticed it anymore, and when I did, I accepted as just a curious aspect of my physiology.

Over the period of three years, I've briefly had "flare ups" that caused minor anxiety, and ended up seeing another physician, who went out of his way to reassure me that that he had personally seen ALS in his practice, had 6 current patients with MS, and that if he even suspected I might be suspicious for either one, he would be on the phone with the neurologist instead of trying to reassure me. Like most doctors, he'd never heard of BFS, but was not terribly concerned with fasciculations.

Now three years later, my wife got a great job opportunity close to home and we moved back to my home state where I am currently staying at home with my 10 month old. Maybe it's because suddenly I have time again, but I've recently had a pretty nasty flare up of twitching. Despite having this problem off and on for 3 years, these are concerning because most of the twitching now seems to be taking place in the belly, which is new. I also think that I may have occasional "twinges" in the tongue, although I confess I can't be sure whether these are actually twitches or "sensory related" twinges...they are so small, infrequent, and always a single "*beep*". I still have twitches ALL over the place during this flare up, ranging from thumpers in my wrist to "rolling twitches" in my calves....but the majority seem to hit around my belly button and under both sides of my rib cage at the moment.

So I came back to both offer and seek a little reassurance. give some..... Know that 3 years ago, I had every single symptom imaginable under the sun associated with BFS..... twitching everywhere, cramps, subjective weakness from obsessively torturing my limbs in strength testing, freaking out about my non-dominant hand having a weaker grip than my dominant (very normal), and every type of twitch you can imagine. I think at one time, I had like 5 different classifications...thumpers, rollers, pops, etc..and in every part of my body I can imagine...even parts I never thought of as having muscle before like certain places on my face. 3 years later, I am still here. I never developed any real neurological weakness, and was never able to raise enough suspicion for a general practitioner to even refer me to a neurologist (they usually tried to give me anxiety meds.) I was absolutely convinced I had MND at several point, and was just waiting for the weakness to become more obvious. It never happened.

Now, to seek a little reassurance:

1. Has anyone here had tongue twitching that has turned out to be almost certainly benign?

2. Does anyone else ever have periods of time where the twitching is primarily in the stomach muscles?

(possible)Tongue twitching and belly twitching have almost got me going down that road again, just because they seem more ominous than other types of twitching.

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Joined: May 5th, 2014, 10:45 am

Re: Back after 3 years

Postby leaflea on February 26th, 2017, 9:16 pm

So sorry this board has become lame. Kind of you to come back. I don't even remember your first question - sorry. That's the brain fog :-) If it had to do with tongue twitches I've had little of that, but do a search on this board and you will find oodles. Mine has been pretty subjective, as I'm too afraid to look in the mirror. Watch, now I'll have it tonight. As for abdominal/stomach. Oh my yes! It was my first noticeable area, and I joked at first that I had a baby kicking inside as it felt exactly like that. After a few weeks of that, I googled it and BOOM, body-wide twitching and from there, a story almost identical to yours. Take care and congrats on the baby! enjoy.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Back after 3 years



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