Terrified of ALS

[JohnM]

It's me again. So, last week I was dealing with pretty frequent muscle twitching all over my body, which was terrifying enough. But now the twitching has been replaced by an oberwhelming feeling of weakness in my arms and legs, and even my jaw/tongue. I've tried to convince myself that it's just stiffness from all the self testing I've been doing (running in place for as long as I can, lifting heavy objects repeatedly, jumping up and down, flexing), but I'm not succeeding. I'm only 22, and I've convinced myself that I will be dead in less than two years because of ALS. I can't get ahold of a neurologist until Monday (these things always strike on a Friday), and I feel like I am, once again, going insane with fear. Has anyone else ever experienced this before?

 

[Rinka]

Hi @JohnM i can imagine that it is frustrating and scary. You mentioned that you did some physical tests?
Such as running and repetitions.
I’m just shooting in the dark, but have you made sure that you are on top of your needed daily minerals and vitamins? If you exercise or if you are stressed, your body will need them to function.
If one is low on magnesium, muscle switching usually occurs, it can make them weaker as well.
I think you are right, you have over done it with the tests and now you body is basically telling you to leave it alone.
Make sure that you eat healthy and take some mineral and vitamin supplements to support your body, through the stress.

 

[Kelculator]

I agree with you that your self testing is the cause to your tiredness. Anxiety can cause weakness in muscles too, since, well-- if you believe that your muscles are weak, it really appears as if they are weak. I just then used my willpower to convince myself that my legs are really weak, and now they feel like jelly.
Perhaps you have been having nervous ticks? Or as Rinka suggested, this is a deficiency problem?
I understand your fear, since if I'm in this situation I'd be really scared too. Just one last question-- Do you still have muscle twitches now? Or just tiredness?

 

[JohnM]

I agree with you that your self testing is the cause to your tiredness. Anxiety can cause weakness in muscles too, since, well-- if you believe that your muscles are weak, it really appears as if they are weak. I just then used my willpower to convince myself that my legs are really weak, and now they feel like jelly.
Perhaps you have been having nervous ticks? Or as Rinka suggested, this is a deficiency problem?
I understand your fear, since if I'm in this situation I'd be really scared too. Just one last question-- Do you still have muscle twitches now? Or just tiredness?

I very rarely get twitches now. Just a sense of stiffness/ weakness.

 

[Kelculator]

I very rarely get twitches now. Just a sense of stiffness/ weakness.

Then it is a good sign, and gives evidence to the fact that the twitches are caused by less serious reasons. They have not grown more severe or frequent, so you should not worry about it too much.
I know what I'm saying can't actually comfort you, but I hope at least it brings you a bit of reassurance. Have a nice day!

 

[JohnM]

Then it is a good sign, and gives evidence to the fact that the twitches are caused by less serious reasons. They have not grown more severe or frequent, so you should not worry about it too much.
I know what I'm saying can't actually comfort you, but I hope at least it brings you a bit of reassurance. Have a nice day!

Every bit of information and perspective helps. Thank you, both of you.

 

[Concernedgal]

Although als main symptom is muscle weakness...think about all the muscles you have in your body. For example. ..your mouth. You would experience drooling ,and also your vocal cords...if you think about it is a muscle too. You would have difficulty speaking. It's not always about the leg muscles and the arm muscles. It's all muscles that are effected. If it would make you feel better ...contact the neurologist. You fatigued your muscles by testing them for strength. Rest. Rest your body for a couple of days and see what happens.

 

[Rinka]

Every bit of information and perspective helps. Thank you, both of you.

Hi, no worries. As @Concernedgal said, not only your major muscles show weaknesses but also the small minor ones, the ones one might not be as aware of.
Give your body a break, take minerals and spoil it with good things.

 

[Richard G]

It's me again. So, last week I was dealing with pretty frequent muscle twitching all over my body, which was terrifying enough. But now the twitching has been replaced by an oberwhelming feeling of weakness in my arms and legs, and even my jaw/tongue. I've tried to convince myself that it's just stiffness from all the self testing I've been doing (running in place for as long as I can, lifting heavy objects repeatedly, jumping up and down, flexing), but I'm not succeeding. I'm only 22, and I've convinced myself that I will be dead in less than two years because of ALS. I can't get ahold of a neurologist until Monday (these things always strike on a Friday), and I feel like I am, once again, going insane with fear. Has anyone else ever experienced this before?

There is a syndrome that I have called benign fasiculation syndrome which is constant twitching of musxles...for me it's from the knees down..had it since I was 20 and I'm now 58. Not saying this is what you have but I remember the fear of ALS as well.

 

[JohnM]

Thank you everyone for the replies. Unfortunately, just as I started reading about the twitching, it returned, along with the terrible rising/falling floor sensation. Seeing a psychiatrist Monday and a neuro in Feb. It's going to be a struggle getting through this worry, but it's made easier by reading you guys' responses, so thanks again.

 

[janemariesayed]

Thank you everyone for the replies. Unfortunately, just as I started reading about the twitching, it returned, along with the terrible rising/falling floor sensation. Seeing a psychiatrist Monday and a neuro in Feb. It's going to be a struggle getting through this worry, but it's made easier by reading you guys' responses, so thanks again.

You are going to be just fine John. It is anxieties and a nervous twitch probably. Chin up and try to not let it get to you so much. Try to get your mind on something else if you can.

 

[fac6]

I am going through this very trauma right now...

Severe muscle twitches since past 2 months that seem to be getting worse, I have developed muscle weakness in my right leg and arms. If I sit and type on my computer my biceps tire out and I have to rest my arms. I have odd sensations in my throat and tongue, my tongue tingles at the end which I am told is a nerve issue, my dexterity in my fingers seems to be going and I am terrified I have ALS. I have had blood tests that show normal just elevated Liver ALT levels.

I seem to be in a nightmare I cant get out of and only time will tell.

 

[JohnM]

I am going through this very trauma right now...

Severe muscle twitches since past 2 months that seem to be getting worse, I have developed muscle weakness in my right leg and arms. If I sit and type on my computer my biceps tire out and I have to rest my arms. I have odd sensations in my throat and tongue, my tongue tingles at the end which I am told is a nerve issue, my dexterity in my fingers seems to be going and I am terrified I have ALS. I have had blood tests that show normal just elevated Liver ALT levels.

I seem to be in a nightmare I cant get out of and only time will tell.

Hey fac6. I’ve since seen a neurologist and had an MRI, and I DONT have ALS or any other underlying neurological condition. Since then all of my symptoms, which felt very real to me, have dissapeared. Be aware of the tremendous power your anxious brain has to focus your mind on otherwise normal sensations and inflate them into dire symptoms, and also it’s ability to create new symptoms. If it gets really bad, go see neuro, but take comfort in the fact that ALS is EXTREMELY rare. I really thought I was going to be paralyzed or dead by this time just a few months ago, but I feel just fine now. You’ll get through this. Don’t hesitate to message me here if your need anything.

 

[personnell]

Have you had any health scares in the past where your symptoms start to fade as soon as you get confirmation from a doctor that nothing is wrong?

 

[janemariesayed]

Muscle twitches are part of anxiety. It is a symptom. I get twitches too but I know it is because of anxiety. Anxiety is to do with our nerves and we have nerves all over our body.

 

[JohnM]

Have you had any health scares in the past where your symptoms start to fade as soon as you get confirmation from a doctor that nothing is wrong?

I’ve had plenty of experiences like that. All the time man.

 

[fac6]

Hi John,

A long post here but here is an update on my situation and consequent findings for those in a similar situation to me...

All of my symptoms I felt were increasing so I went to see a Neurologist. Despite me being 100% certain I had ALS my neuro did not seem too concerned at all. He said to me that I was standing in front of him with fairly normal reflexes, no muscle atrophy, no weakness etc. and from what I was telling him he was not concerned or thinking of ALS. I told him why I thought I had it and how could he not even be considering it? He said he has seen many ALS patients and none have had what I was describing to him. He said most of the time when patients come to him and they have it, many are not turning up and self-diagnosing themselves with it, they most often than not turn up unaware they have it and present him with different symptoms. He then went on to tell me yes I had twitches but in his opinion, it was more than likely BFS. He did say he felt I was suffering all the major signs of anxiety. I asked him was he going to do an EMG on me and he stated he did not even feel it necessary, the results are also down to the interpreter and that even if he did it and it was clear would I be convinced?

I went away rather annoyed with him. So I went to another Neurologist for a second opinion, he also said he did not feel it was ALS.

A short time later I felt my symptoms were getting worse, twitches everywhere and in particular, I was having a constant nasty twitch in my thigh muscle above the knee, my calve on my right leg was feeling so weak and I was also having increased feeling of my tongue being heavy etc. I felt at anytime I would start to slur. I could not take this anymore so I went back to the first Neuro for a follow-up...

He was very understanding and gave me another physical examination and said his opinion still remained the same that I had BFS and that I was also suffering from hypochondriasis. He said he could clearly see the twitch but it was of no concern for him and yes to a degree I was right in that time would reveal with utter certainty if it was ALS or not.

We discussed an EMG and again he said he felt it not necessary but to ease my anxiety he would do one and give me a running commentary. I accepted but of course, I was petrified because in my mind I was convinced I had it.

He gave me two tests I think, the first one was in my left arm where he attached something that kinda gave me electric shocks. He put it on my elbow and put wires on my fingers and this electrode on my elbow kept clicking and giving me shocks! He then did the same by putting it behind my left knee and the wires were on my feet and ankles.

After this he then had this needle attached to a wire, he looked at my left thigh muscle and said... "This is the one that you feel is twitching badly and it's due to ALS right?" He then stuck it in my thigh and started telling me what he was doing and the sound and noise wave that he was looking for on his computer. A kind of white noise sound was coming out of the speaker and he told me to tense my thigh and when I did a lot of crackling noise happened. He told me to relax and then everything went quiet. He explained to me that with ALS there would be certain markers and told me what they were and he asked me "Do you hear what I am describing?" When I said no he said "Exactly! because you don't have ALS!" He then stated that this one muscle for me would not be enough so he said "let's do your right calve where you said it all started from 2 months ago and I am sure the same results will show" So he then stuck the needle in my calve, gave me a running commentary on what ALS would look like visually on his computer and the sound it would create. He then said "Listen and look silence... Nothing! Ergo you do NOT have ALS"

After this, he then said "Shall I do more muscles or are you now going to believe your Neurologist? I can do more muscles but the same result will occur but for sure you will go home and convince yourself you still have it as I did not put the needle in your tongue or bicep etc. Where does it stop?"

He then stopped the test and sat me down and said to me "You do NOT have ALS regardless of what you have convinced yourself of. I am the Neurologist and my clinical finding is that you have BFS and are suffering anxiety. Do you trust me now and feel at ease? An EMG is a good tool to help confirm an ALS diagnosis and I can tell you right now if you did have it your EMG would have showed something but yours is clean!

He then printed me off some pages on his computer on dealing with 'health anxiety'

Sorry this post was so long but I wanted to share my story with those in the same situation as me who are worrying and stressing. It's amazing how anxiety can bring on a LOT of symptoms and play with your mind, also the WORST thing to do is self-diagnose and google your symptoms.


What a lovely Neurologist he was and he was right... When I got home I started asking myself "Can his test be really conclusive as he told me some doctors test 5 muscles and some 10 yet for me, he just did my left thigh and right calve. What if it is in my tongue or my bicep?" He was 100% correct, so with this knowledge, I took some time out, chuckled and said to myself "NO! you WILL accept his findings" However a couple of days on I am now again still convincing myself I have it. I am thinking that he did not do check everywhere and I also read some people who have ALS also initially had clean EMG's. So I am still fighting this every day.

Since the EMG guess what's reduced? Yup... My twitches! They are still there, yesterday I had hundreds of them, the weakness in my calve is still there but the twitches have reduced I think by about 50% Then again there is a part of me that says it's just coincidence...

Sorry for the long post!

Wishing you all the very best in your health.