Worried twitching was early ALS

[SwissGuy35]

Hello everyone

First off it's a blessing to have a Forum like this. Thank you all for it. I have thoroughly read the "read before post".

I am 35 yo male (Swiss) and I have widespread muscle twitching 24/7, mainly on my calves, thighs, buttocks, upper arms, and less often on my upper/lower back. The more anxious I am the more locations can twitch I feel.

I have noticed these continuous twitching by End of January 2024, but I know I have had twitches around the knees towards late 2023. I first noticed the repeated twitching on my left arm just above the elbow, when I used the muscle it would twitch a few times. This was in August 2023.

I have severe health anxiety and went through horrid months full of health scares:

November 23: Prolactin too high on separate occasions, MRI ordered to rule out Prolactinoma
24 November 23: MRI did not show Prolactinoma, but a possible tumor as DD
28 December 23: Follow-Up high-resolution MRI
9 January 24: Revelation it was no tumor, but a benign bone formation
19 January 24: Had to go to the ENT due to weeks of sore throat near the right tonsil, feared it was cancer (it wasn't)
22 January 24: Diagnosis of Hashimoto's thyreoiditis + cortisol and precursor too high (anxious it was due to a tumor producing cortisol)
February 24: Tumor markers tested, one was too high (neuron-specific enolase), feared it was due to a lung tumor; the 2nd test was even higher than the 1st..
1 March 24: Thorax CT was clear
13 March 24: Neck lymph nodes felt enlarged, terrified I had Lymphoma.
18 March 24: Neck ultrasound was completely normal
20 March 24: Petechiae showed up on the soft palate and on various parts of the body, terrified I had acute Leukemia.
25 March 24: Blood test ruled out acute Leukemia
27 March 24: I wanted to check if indeed all Petechiae had disappeared and it was then that I was mortified when I saw my lower leg twitching and I remembered it never went away but I didn't pay attention to it as I thought it doesn't matter anyway as I feared cancer all this time.

From there I went downhill so fast. I can feel the twitching 24/7 as soon as the muscles are at rest. I am tensed up and the muscles feel heavy (legs, shoulders, neck, arms) and also they feel kind of "loaded" kind of awaiting the next release of twitches. Most twitches I don't feel, but see, and lots I can feel. I don't feel them as prominent when I get sleepy and go to bed. However when I wake up they are there. It never stops. The more I pay attention to my body parts that twitch, the more twitches I feel, if I move my body I don't feel twitching. Also if I sit or lay down it takes a few seconds for the first twitches to show up.

I asked my GP about it and of course he doesn't take me seriously any more after all those false alarms. I know I should go to a Neurologist, but I am so scared he will tell me that I got ALS. No wonder does my GP not take me seriously, because I didn't tell him for how long I am already twitching (because of more pressing matters).

I am unsure if I got true weakness. My dominant side is the right side (right-handed, playing Football using the right foot). I don't have the same amount of strength and endurance on the left side (pincer grip, calf raise) compared to the right. However I can't say whether or not this was like that let's say three years ago. I do not have muscle atrophy anywhere, only the thumb muscle of my left, non-dominant hand is smaller than the one on the right side, but again my right hand is even bigger than the left. I feel muscle fatigue around the shoulders, but I can't tell whether this is abnormal or because I am so tensed up.

I know that I am an easy twitcher so to speak, because I remember that tapping the facial nerve on the cheeks elicited muscle twitching even in May 2022. But again I find it highly abnormal that if I poke my calf muscles that they "respond" with twitches. I have seen exactly this in ALS patients on YouTube termed "hyperreflexia". I remember that I had the odd twitch here and there years ago, but not nearly as constant or widespread like nowadays.

I am utterly scared that this is down to early ALS symptoms, especially because I never had these twitches 24/7.

I am hopeful that you guys maybe have some good advice for me or could even calm me down.

Thank you very much in advance.

Kind regards from Switzerland,
Damian

 

[Nikki J]

It sounds like all the stress triggered the twitching. The chemical response to stress has your system in overdrive. In my opinion it does not sound remotely like als

You definitely need to stop googling and watching youtube. Hyperreflexia is NOT twitching. It found by a doctor examining you. Incidentally, true hyperreflexia is common in anxious people and usually benign.

I would strongly suggest you sign off here and go back to your doctor. Tell them what you are experiencing and if they say there is nothing physical again ask for help in managing your stress

 

[SwissGuy35]

Dear Nikki

Thank you very much for your swift reply.

I know the odds seem in favor of me not having ALS since I am suffering from chronic high-level stress stemming from my health anxiety and the recent health scares which destroyed all trust in my body.

Nevertheless I wondered if it can start in both legs at once. I understand weakness usually accompanies or precedes fasciculations, but I am failing to believe that the severity of my twitching could even be benign. As I said I never had it like that and I noticed exercising (namely fast walking for long distances) is much less easy for me for the past two to three weeks. It seems as though it took greater effort and I often have stiff/sore muscles after those walks in the upper legs and buttocks (more on the left side).

I also found it very irritating that I didn't seem to notice the fasciculations during the time when cancer was a possibility and if I did it was mostly in the evening when I was relaxing on the Sofa. I told my mother by the End of January 24 that I had these twitches on both my (lower) legs. A few days later the twitching eased and it went off my mind. Two weeks later or so my mother asked me what was about the anxiety of ALS and I am pretty sure I responded that the twitches disappeared.

They could be felt every now and then, but I am certain only when my legs were still for a long time on the Sofa. I didn't pay attention to them as I thought it wouldn't matter anyway as I feared I had cancer. I am not sure I could have missed fasciculations of the magnitude I have them now. I don't think so. Although I am not sure I would say they weren't not nearly as prominent as they are now. Maybe my emotional stress make them 3 times worse, but I really have a hard time believing that, especially since my exercise tolerance is felt much lower than it was a month ago.

Most recently I also noticed that my tongue twitches every now and then. I also noticed that I can provoke the fasciculations. No matter if in the tongue or on the calves. If I tense the affected muscles and release them, they flicker a few times after releasing the tension. This happens in the tongue as well as in the calves and sometimes upper arms. Is this also harmless in your view?
It feels as though all my muscles, body-wide, are easily irritated and fatigued thus the fasciculations.

I will follow up with my GP. Psychotherapy to combat the severe health anxiety is also set up and starts on April 12. I take 10mg Escitalopram daily since September 2022. I am not deficient in Magnesium or Vitamin D as I supplement both for years.

Thank you so much for your time and insights.

 

[lgelb]

As you go through the counseling, you might at some point discuss trying a different SSRI or another drug or add-on for the anxiety. That is a common thing, that the drug is not enough, so I'm glad you're doing counseling as well.

You don't need to "trust" your body. You just need to go on with it and keep your eyes on the road that is the rest of your life.

 

[SwissGuy35]

Dear all

Quick Update:
My GP brushed it all off (without having seen me in person and without having seen my abundant fasciculations!). He answered my begging E-Mail saying I don't have ALS and that he and I would know that my mind is playing tricks on me again.

He denied my plea of showing my high-resolution MRI scan of my brain (made to rule out a brain tumor; Dec 28, 2023) to a Neurologist whether he/she could see something that would point to neuron damage. I am not even certain one could see something like that on an MRI, let alone if it was early stage.

I know and am aware that I have severe health anxiety, and none of the cancer scares turned out true, but I am so afraid that I am being dismissed now when it could really be something very bad going on.

The twitching today is really intense, focusing mainly on the left leg, much less the right leg, left buttock, left arm where I noticed fine fasciculations yesterday afternoon for the first time. Also the thumb muscle twitched a few times yesterday. In general my muscles "jolt" very easily these days. Some of the muscle twitching leads to noticable jerking of the affected body part. I have no idea if this is the same way in beginning ALS.

I don't want to waste anyone's time, but answers would be much appreciated:

1) Could ALS twitching that came before weakness exacerbate in a matter of days and also become so widespread in the same amount of time?

I am so scared, because there is a number of people who only got twitching first, despite the sticky "read before posting" saying otherwise.

I really can't tell whether I had pathological weakness anywhere. My left side (hand, leg, foot) is not as strong as the right side. It doesn't sooth me that I am right-handed and in a way "right-footed". The exercise tolerance is clearly less left than right.

I purchased a USD 50 membership, so I hope this money can help somewhere.

Thank you all.

 

[Nikki J]

Twitching doesn’t matter and you can’t tell anything by the character , frequency etc.

We can’t make your gp do anything. The request for a specialty reread of your mri was really over the top.

I strongly suggest you try asking for more help managing your anxiety which is clearly out of control and ruining your life.

I don’t think for one instant you have ALS and I repeat my advice to stop googling. Step away from the computer and go for a run or something. I wish I could

 

[SwissGuy35]

Dear Nikki

Thank you again for your swift reply.

I know I must come across silly and in overdrive. I am in overdrive, I know that. I also know that my mental state is beyond insanity. It has been steadily declining for the past five months due to health scare after health scare and me worrying non-stop.

I did go outside just now and my left leg really feels exhausted. Not the lower leg but the thigh and buttock. I did some exercise last Thursday to prove myself I have the same amount of strength in my left leg as well as in my right leg. I didn't and therefore developed massive sore muscles which did not fully subside in the left leg. Neither did it fully subside in the right leg, but I don't feel the same strength and capacity in the left leg only. I have had these feelings of weakness in my thighs and buttocks on and off since the End of February 2024. This combined with the relentless twitching makes me go absolutely nuts and everyone, my GP, my mother, my brother tells me how glad they were that psychotherapy will start soon (April 12).

I feel so lost. I have to wait it out and basically have to hope that not more weakness will show up.

PS. I did not google these stories, I read them here on this forum. Two people who had only twitching at first and one who is a Moderator on here knows numerous younger than 40 people who initially only had twitching. This contradicts the "please read before posting" which says that it was rare to have twitching as the initial presenting symptom. I clung to that until this hope also vanished into thin air.

And now that the twitching also showed in the left upper arm but not in the right upper arm makes me even more worried.

 

[Nikki J]

I can tell you that there are people who were diagnosed incorrectly that fall into the twitching first group. That they did not return and tell us is terrible.

It is utterly untrue there is a moderator that will say that. The mods are me, Shiftkicker and lgelb. David is the admin.

We are not here to argue. As I said we have no control over your doctor. I am sorry you are suffering. I am so glad you are getting therapy. Please commit to it

 

[SwissGuy35]

Hi Nikki

I am sorry, I did say it incorrectly. It wasn't a Moderator, but a diagnosed member who had fasciculations before weakness herself and knows "numerous" young people who presented the same way, fasciculations before weakness.

I absolutely do not want to argue, I am so glad that people like you do reply, because it gives me something whereas otherwise I wouldn't have anything at hand.

Just now I had like 15 muscle jerks in a row in the left biceps. That wasn't fasciculations, but clonus. Is that an ALS symptom as well, that muscles jerk and create a movement of the affected body part? This happens to me too among the fasciculations.

Thanks a ton.

 

[Nikki J]

I doubt it was clonus which can only be determined by a doctor. You need to stop. We do not have the resources to support the undiagnosed. There are groups on reddit for people like you. Try muscle twitch and ALSORNOT

 

[SwissGuy35]

Okay Nikki, I agree it really needs to end here. I am sorry to waste your time.

For one last time:

Despite the frightning signs and symptoms and hyperactive muscle movements you do not think ALS was a possibility in my case? And do you think in my case this is all anxiety based?

I am sure you have seen and heard a lot of "here is how I started".

Thank you one last time.

 

[Nikki J]

Asked and answered. I have seen other people post like you. None of them ended up diagnosed. Good luck

 

[lgelb]

I will add (before closing the thread since your questions have been fully addressed) that the claim of knowing "numerous young PALS" presenting with twitching alone cannot possibly be true, given the rarity of the disease in the young (the linked paper shows 0.6 cases per 100,000 people aged 18-39) and the rarity of presenting with twitching per se without clinical movement compromise.

I hope counseling helps you see that the "frightening" twitches are part of life, not death. Please also consider visiting the subreddits that Nikki mentioned. You are not alone in this.