Worried about symptoms

[Ragnarokk]

Hello.

I am a new member. My mother has ALS. She was diagnosed 3 months ago. She has gone through genetic testing. Her condition is sporadic. Not Fals.
I was deeply sad, depressed and anxious and was prescribed medication for depression and anxiety.

2 months ago I got twitches in both hands as well as well as needle like feeling in both hands. Fasciculations started in both legs and has now reached most of the body. Still, calves twitch much more than the rest of the body. I have some pain in the left leg especially during the night. I take SSRI medication. It helps for the pain but doesn't help for fasciculations.

The fasciculations have been there for 45 days now. The whole situation, since the hands episode, has started 60 days ago. I have no strength issues. I have no motoric problem. Cpk is normal.I didn't get an EMG yet but it'll come.

I am very worried. I have read the sticker. I really hope you can help and share your knowledge and experience.

Does it look like an ALS onset ? Do you think the fasciculations could be a consequence of anxiety and depression?

Sincerely.

J.k

 

[Nikki J]

1 No. 2 Yes.
it is extremely common for family members to get symptoms when their person is diagnosed. Even those who are not blood relatives. Twitching is extremely common and yes stress and anxiety can contribute

I am very sorry about your mom though negative genetic testing is good news for you. Please consider counseling if the ssri isn’t helping enough. Going through ALS with a loved one is extremely traumatic

 

[Ragnarokk]

Another detail. The pain in the leg as well as the twitching stop when the muscles is active.

 

[Nikki J]

Still doesn’t sound like ALS

 

[affected]

I'm so sorry about your mum's diagnosis.
Everything has told you clearly that you don't have it - in fact it would be pretty close to impossible for you to start at the same time as mum. Just doesn't happen.

Please, your mum has a serious, terminal disease, can you turn your mind to her and how you can help her and make the most of your time with her for what she has left?

 

[Clearwater AL]

Ragnarokk... what state are you in? I notice in your Bio you state US but BC is no state.

 

[Ragnarokk]

Hello again.

When it comes to my mum, i do the best I can. It is not easy for me because I am extremely anxious and because we live very far from each other. I have had anxiety attacks and I do the best I can to keep my sanity.


This period has been the worst in my entire life. I have to lick my wounds, trust my mother when I don't feel too anxious and sad as well as try to work. It is like a nightmare. But it is real.

I have a question.

As far as I understand cpk shows muscle deterioration when the level is too high. Does that mean that cpk level will stay low if fasciculations are not malignant?

I ll take an emg next week. I am literally dead scared.

 

[Nikki J]

Cpk is way too non specific to draw any conclusions on fasciculations.

 

[Ragnarokk]

Any idea about how to get rid of fasciculation?

 

[ShiftKicker]

You might have better luck in a forum that focuses on twitching specifically. Reddit has a good one- r/MuscleTwitch.

 

[affected]

Please see your doctor as they can advise you on what is best for you next based on your exams and tests.
I know it is very hard for you. I looked after my husband, my soul mate until he died from ALS. We feel your pain.
But you honestly cannot possibly also have ALS.
Your doctor can help you deal with your anxiety if you talk to them honestly.

 

[Ragnarokk]

Hello

I certainly have an anxiety problem. My reaction to my mother's diagnosis was explosive. I had anxiety attacks, was afraid for my family, desperate for my mother... I lost it yes, I certainly did it, anxiety took over .

My symptoms appeared during this period. Twitching and burning pain. I never had long time twitching before. Neither did I experience burning neurogenic pain.

This I why I am afraid of the disease. Have been dealing with health anxiety for almost 2,5 months now. I even went by myself to the psychiatric hospital to get some help. I ll probably get an EMG next week.

Is an EMG ok, too early, almost 3 months after the beginning of the symptoms?

 

[affected]

You do not have ALS, it is not possible that you develop ALS at the same time as you mum.
If you won't believe doctors and obviously don't believe us, we are done.

We have given you so much information, including why the EMG would not be too early, but you are so far down the rabbit hole of despair you won't hear us. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

Please stop now. This is so unhelpful for you. Go get the EMG if you want. But no more reporting symptoms here.

If you choose to help your mother who does have ALS we will support you in that, but no more focusing on what you don't have.
Twitching and pain are not ALS, they are just not.

 

[Ragnarokk]

Ok. Thanks for your answer.

 

[Ragnarokk]

Good evening

I keep reading about benign fasciculations, benign fasciculations syndrom etc... I have a question.

Do benign fasciculations generally have to be a syndrom?

Many people have bfs for years. This is a syndrom I guess.
I also read on the forum that some others have it for 15 days or some months.

Are fasciculations classified as a syndrom then or just random benign fasciculations ?

Thanks