Need advise please

[beowulf]

Hello, I posted here more then a half year ago, complaining about twitching.

Im down in the rabbit hole

Hello everyone 38 years old 75kg with no family history. I'll try to make my story short. Last year I had a couple of months of very very high stress for the fear of having (thanks doctor Google) a colon cancer, then stomach cancer then pancreas cancer due to a pain on the left side which...

www.alsforums.com

After that I had several visits to specialist, last was on February this year: negative and an Emg on November: negative. I don't have any weakness, as I periodically test my strength at the gym and I can raise the same weight I used too, although my muscle get fatigued easily. The twitching has constantly increased since, and now it reached a point when I'm really worried. If I move I don't feel but if I stay still I feel pops everywhere, one here, two there, all over the body. I get also a lot of weird feeling of crawling under the skin, especially on the arms on the face and the stomach but when I look at it apparently nothing is moving. I started to feel them a year ago, but as for the twitching, it has increased a lot. Might they be very weak fasciculations? No pain neither a single cramp ever since. I'm very aware of bfs but at this extent it looks somethin more sinister. Its a Couple of nights that I dream myself being diagnosed, and I wake up with a stone on my heart. I'm really down. Here it's night I cannot sleep from this twitching and crawling. What do you think honestly? How can it be so widespread and insistent without weakness if it is als ?

 

[KarenNWendyn]

You probably are having fasciculations. But so what? Twitching (fasciculations) is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. It doesn’t matter how much you twitch, or how often, where the twitching occurs. If you don’t have clinical weakness and failure, then you don’t have ALS. Period.

Then you had negative EMGs. So you’re in the clear. No ALS. No need to be here.

 

[affected]

Twitching means NOTHING. Time to tell this awful anxiety to your doctor and get serious help. This NOT ALS.

 

[beowulf]

I see people referring to Fasciculations as sometimes vermicular; do you know what that mean ? Does that mean they look like worms moving under the skin, or they feel like the worms under the skin; i'm literally now overwhelmed of the latter, its like there is a storm of insect going through my body all, legs, arms face, and it is constant. its much better if i don't wear clothes; but i barely see something even a tiny muscle movement; i see that only on the calves if i lay on bed for five minutes its like my nerves gets irritated and the start twichting. But if i sit on the chair and i look at my calves they don't twich.
And yes, although i have this weakness sensation, i dont have any weakness; at gym i can still raise exactly the same weights i'm used to, and i push hard.

I'm really confused, My wife thinks I'm crazy because all the specialists said i'm fine.
I'll have my, i think 6 EMG on friday, i'm just afraid to be a rare case of a rare disease...

 

[affected]

when you go for the EMG, ask your doctor about this. twitching means NOTHING

 

[KarenNWendyn]

Beowulf, your wife is right. Time to let go of this and start living your life. Those of us living with ALS wish we could do the same.

 

[lgelb]

You have had multiple cancer fears, now ALS. Your nutrition, hydration, sleep, stress and exercise are probably all under/overcooked in many ways.

It's time to seek counseling, truly, if you want to lead the healthy life that you deserve, with happiness in your family life.

You might also try simple things -- massage, hot tub, swimming, daily stretching walking, pink noise at night, etc. The more you control how you feel, the more you will realize that indeed that control is yours.

Best,
Laurie

 

[beowulf]

Hello,

i've done the NVC/EMG; totally clean, not even a single fasciculations picked up.
I choosed the same doctor who did the same exam to me november 2018; the first time though he left the needle
inserted longer than this time.
I'm happy for the result sure, but i don't understand really what is going on with me...
Because i moved from Italy to Switzerland few months ago, i'll go to the new doctor and explain all my story and let him help me; i'll stop doing by myself, which is, probably, the reason why i'm still here after two and half year.

Thank you very much for your help, really ...

 

[Nikki J]

You are not weak. You have a clean EMG. You don’t have ALS. You twitch and have sensations of weakness you say. This is totally consistent with benign fasciculation syndrome which will not do anything bad to you

i am glad you are going to rely on your doctor but in the meantime consider the above and believe you will be fine. You will be happier and so will your wife

good luck

 

[beowulf]

I'm here again, i don't enjoy to do this but there is a new symptom from about a week

The right hand (I'm left handed) if feels more resistent to open. There is no weakness on the hand and the fingers move fine.
I can carry a pack of 9 liters of water with the only index finger for some 50 meters so the hand is definitely not weak
but this symptom is actually scaring me, it feels like an upper motor neuron sign.
My minds tell me it doesn't make sense after two years of widespread fasciculations without weakness showing now a sign of upper motor sign, but I'm not feeling quite about it.
What do you think?

As always, thank you so much.

 

[Nikki J]

Feeling resistant to opening? I suppose you are wondering about spasticity? No not. Not ALS.

quite honestly that comment about 9 litres of water with an index finger is cruel.

 

[KarenNWendyn]

What do you think?

I think it’s time to close this thread. Please do not start another.