Scared

Claudia B · Jul 2, 2019

Hello everyone!

I m verry scared for my boyfriend. For a mounth and a half he's experincing calf muscle fasciculation 24/7 and for time to time he has a little twich in arm, leg, back. Those twichies come and go and they seem to stop when you massage that muscle. The problem is with his calfs who are twiching all the time. i cant see it and feel it if a i put my hand on his calf. For the past week I got really scared that it may be als

(. I saw a lot of cases which started with the same symptoms. Today he has his first emg. We are verry scared and I think I m losing my mind. Other symptoms : he's feet hurts ( but i think is due to the fasciculation), headaches from time to time.
I ve been watching him for time to see if he loose balance or muscle weekness but I think is too soon to notice that...
Can you please tell me how many of the casses you know develop als from this inital symptom calf fasciculation 24/7 and little twiches in the rest of the body who come and go. Or can you tell me other possibilities of diseases...
Thank you.

lgelb · Jul 2, 2019

ALS does not present with twitching in both calves. I am sure the EMG will be reassuring. I don't know what you've read, but he has nothing to worry about in terms of ALS. Twitching most often reflects poor diet, too little exercise and sleep, dehydration, anxiety and/or a bad combination of drugs or supplements. These are all things to consider for him to feel better.

Best,
Laurie

affected · Jul 2, 2019

It may help you to start here.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

Claudia B · Jul 3, 2019

Thank you so much for your support.
The EMG was postpone till monday

and I think we are loosing our minds till then.
This morning he told me that his calfs are not twiching constantly ...but more left and less right...I put my hands on his calf and he's right..plus he sees modification in his left muscles calf...he says it's different than the right one..not necessarly smaller but different..he also develop some pain in thoose muscle. I dont think he experience any weekness..he did't say and I couldnt see any.
He is in a very bad mood, conviced he has something very very bad like ALS. He also gets twiching on his arm shoulder, back but just 3,4 pops and stops. The twiching in his calfs never stop..It s not that intense like the one on his body. They twich all along his muscle but one pop there another one higheer or lower on his calf. They dont have a hot spot like the rest of his twiching on his body.They pop pop everyware on his calfs. I hope is explicit enough...
It s very hard to live like this .. not knowing...its ALS? it's something else? it s BFS?

affected · Jul 3, 2019

It might really help to read that post again that I linked you to.
Now until the EMG you both have the choice on how you will spend your time - staying away from searching for terminal illness, and from this forum, and doing things together that will bring you both some joy can't be a wrong choice no matter what happens next.
You are not describing ALS as that link I sent tells you quite clearly, but I do sincerely wish you both the best.
Do come back after the EMG and let us know the result.

Claudia B · Jul 5, 2019

Hi everyone! The EMG was fine or so the doctor says. The twiching are still there... hope is just an anxiety problem.. or bfs..hope was not too soon for the emg. I ll keep you update. Thank you so much for the effort you are putting on this forum.

Bestfriends14 · Jul 5, 2019

Great news-no ALS! The EMG was not done too soon so no need to update the forum any further. Congrats again on the clean EMG. Enjoy a nice, long healthy life. Take good care

affected · Jul 5, 2019

If you go back and read the post I linked you to at the start your concerns are answered clearly there - twitching means NOTHING and the EMG can't be done too soon.
I'm so happy for you - you are totally clear and can get on with your life. This is great ☺

pattyblair · Jul 5, 2019

Hi Claudia - my husband's ALS presented itself with twitching in his back as well as both arms. It didn't just start on one side. The muscle weakness started on one side.

pattyblair · Jul 5, 2019

Claudia B said:
Hi everyone! The EMG was fine or so the doctor says. The twiching are still there... hope is just an anxiety problem.. or bfs..hope was not too soon for the emg. I ll keep you update. Thank you so much for the effort you are putting on this forum.

Fantastic news!

Claudia B · Jul 6, 2019

pattyblair said:
Hi Claudia - my husband's ALS presented itself with twitching in his back as well as both arms. It didn't just start on one side. The muscle weakness started on one side.

the emg with needle was perform in his left calf where the twiching are more proeminent. Nothing was found. In his rest of the body with no needle. All was normal. The doctor says if the twiching continues to come back after 6 months. No weekness till now. Hope he will be fine.

Claudia B · Jul 14, 2019

Hello again! I know i told you the emg was fine because the doctor said so. But I was googling what it says in the conclusion and again everithing points me to als... got really scared. I can feel this is als..
So I wil write you the conclusions of the doctor..
CMAP normal
SNAP normal
Needle exam muscles: vastus mediales, peroneus lungus, tibialis anterios and gastrocnemius. No spontaneous activity. MUP with long duration and amplitude. Very low reduction of recruitment in tibiales anterios and gastrocnemius.
Chronic denervation and reinervation in examined muscles without active denevration ( maybe is compatible with an old Chronic Lombo Sacred Radical Disease L4,L5 and S1) how come is fine?
I read a lot and all ALS presents with chronic denevration and reinervation...

lgelb · Jul 14, 2019

ALS presents with both "active"/acute and chronic denervation. As the report points out, the findings match up with longstanding lower spine issues, not ALS. He can see a PT to get some stretching exercises that could help.

Stop reading and start living.

Claudia B · Jul 21, 2019

I’m sorry for keep bothering you..but I’m not in peace with this chronic denervation and reinervation in his muscle “beeing ok”... I’m just wondering why the doctor if she saw chronic denervation and reinervation didn t test other muscles?! To rule out completly als or not..how does she know that the denervation is old and from a back problem.. and not caused by als?! I’m sorry guys for insisting with this but I just don t wan t to end up with a diagnose in a year from now just because the doctor missed something or staying with this anxiety long term... I know you here understand much more than I do.
Thanks