Split hand sign and tongue twitching with 23 years old

[Falli96]

Hello,
my name is Felix, I‘m 23 years old since July and come from Germany.

I‘m scared as hell because I‘m sure for 99% that I have ALS.

My symptoms are fasciculations, tongue twitching, split hand sign (I guess) and some weird thing when I tense my thigh. Looks like fasciculations but I don‘t feel them. Also my patellar reflex is brisk both sides the same. And my thighs are hardened on the inside.

I had an appointment with my neurologist 3-4 weeks ago. He tested my reflexes and strength and did an EMG in many muscles. Between thumb and forefinger, upper and lower arm, calf and the muscle next to the tibia (don‘t know how it is called). He told me that nothing would point to ALS and I should stop worrying about it. But he was a bit concerned about my tongue twitching. He told it can be BFS but as he is my neurologist he‘s obliged to investigate me again in three months.

But I feel and see that atrophy in my right hand progresses and it scares me as hell. Also my tongue still twitches extremly but not when it‘s at rest.
Additionally I had a cruciate ligament surgery 10 days ago that goes hand in hand with muscle wasting in my thigh. I am scared as hell that I cannot build this muscle up again and my cruciate ligament won‘t heal. I also told my neurologist this fear.

As I said I am almost absolutely sure having this desease and lying arround all day withouth being allowed to walk worsens my fear because I think about the consequences always.
Normally I trust my neurologist but as tongue twitching and split hand sign are so specific for ALS I think it can‘t be anything else. I don‘t have clinical weakness yet and can do everything. But my right thumb feels weird at typing texts for example. My parents don‘t take me seriously anymore after my appointment 3-4 weeks ago.

I know pictures don‘t help you much but I want to show why split hand sign scares me so much. I also know small the chance is to have this disease at my age especially as there is no ALS history in my family. I‘m scared that the EMG was performed to shortly, only 5 minutes per muscle. Don‘t want to waste anyone‘s time but I‘m going crazy here and can‘t concentrate on anything else.

Best regards and sorry for my bad english
Felix

 

[Nikki J]

Can’t tell much from pictures but they look ok to me. If your neuro didn’t see it you don’t have it.

Tongue twitching is almost always benign. This is specifically addressed in the read before posting thread at the top of this subforum

Brisk bilateral patellar reflex are considered normal

You have a knee issue. Everything in that area can be attributed to that.

Your thumb feels funny. Not an ALS symptom.

And 5 minutes per muscle is plenty. I am surprised the doctor spent that long even.

You have said nothing to support your fear. Trust your neuro

 

[Falli96]

Hey Nikki,

thanks for your reply. If I unterstood the thread correctly then the EMG would have shown some denervation or reinnervation if my hand has atrophy. Is it really not possible to have atrophy caused by ALS if the EMG was clean in this muscles?

Sorry for taking your time.

 

[grounded]

In ALS, First the nerves begin to lose function. Then muscles begin to die. When enough muscle tissue is lost, atrophy can be seen.

So, by the time you can see atrophy, the EMG will see lots of nerve damage.

 

[Falli96]

Thank you grounded. Can atrophy come up without weakness in ALS?

And I think fasciculations in tense muscles are always a sign for ALS. Or do I have wrong information? I clearly have them always bilateral on the outside of my thighs when I sit and press my leg on the floor.

 

[affected]

Please read this carefully, maybe a couple of times. This really helps us not have to type the same thing over and over.
Twitching means absolutely nothing.

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

 

[mtmirror]

Hi Felix,

I'm not a neurologist but your hands in those images look totally normal to me. This guy who actually had ALS shows what the split hand sign looks like in this video he made about his diagnosis process at 17 mins in. If you watch the whole video, what's notable is that he mentions a fall, starting to limp, all before he even had any twitching. His EMG confirmed ALS right away. This is very different from what you're describing. I think when people get anxious about ALS, some people develop a kind of body dysmorphia where they exaggerate physical characteristics in their mind, in addition to conflating every symptom as evidence of the disease, especially twitching. The irony being that anxiety can easily exacerbate benign twitching and other symptoms.

It's similar to someone worrying about having cancer convincing themselves any symptoms they're having are due to cancer. I'm a bit embarrassed to admit I did that myself. A year ago, I was experiencing symptoms like fatigue, neuropathy, hip pain, difficulty urinating, and so on. During the course of doing tests, they found blood in my urine. That was terrifying because that's a pretty classic cancer symptom and I was scheduled for a CT scan and a procedure called a cystoscopy. My father died from cancer when I was young, so I was especially sensitive to fear of it. For weeks while waiting for the tests, I was convinced my symptoms were stage 4 cancer. The tests were totally normal in the end, and it turned out my symptoms were due to vitamin deficiencies, while the hip pain was due to my mattress being bad.

My point is that it's easy to convince yourself of the worst, despite it being much more likely that it's something benign. You don't need to be a doctor to know that twitching is very often benign. Tongue twitching is seen in Benign Fasciculation Syndrome which is a lot more likely at your age (and any age really) than ALS. Other things can cause twitching, cramping, etc., like Hypoparathyroidism, which is very treatable. So, I hope you can keep your mind open to the idea that your symptoms are benign, and not put yourself through needless stress and anxiety over it.

 

[Falli96]

Sorry, didn‘t want to steal your time. Just thought that this only applies to fasciculations in relaxed muscles.

 

[KarenNWendyn]

Sorry, didn‘t want to steal your time. Just thought that this only applies to fasciculations in relaxed muscles.

Fasciculations are fasciculations. It doesn’t matter if the muscle is tense or relaxed. Just ignore them.

 

[Falli96]

@mtmirror thank you for taking your time and for this long message. I‘ll try to be positive and stop asking Dr. Google. I’ve found that my symptoms get worse when I’m scared. Taking so much time on others‘ problems shows what great people you all are! I‘m very happy that you weren‘t diagnosed with cancer.

@KarenNWendyn thank you. I obviously got something wrong here. Really appreciated.

I‘ll stop posting here. My neuro told me if I have any issue until my next appointment in October I can always come to him. I‘m really happy to have a neuro who cares about me and takes me seriously. Heard different experiences from other guys.