I am so scared

[piinkman]

Hello,

at first im sorry, i will probably do a lot of grammar mistakes, since my main language is german and i'm not very fluent in english.

If this text is to long for you, then you can skip to the end, where i wrote most of my symptoms.

And i really don't want to steal to much of your time, so i will follow your rules and if you say you don't think its ALS i will accept it and i won't start arguing.

Before i tell my story i will start with yes! I do have anxiety, and really, really bad anxiety. I thought i had so many diseases and none of my fears turned out to be true.

But this, is the worst fear i ever had and it just wont stop, because my symptoms wont stop.


It all started last year in june. I noticed that i have a tremor in my fingers but did not think about it to much, because i'm addicted to suboxone and diazepam, so you would think that tremor is very common in people who are addicted.

Then one day, i would paint the walls. It was just a little spot i had to paint and i hold the brush like 5 minutes. After i finished, my thumb started twitching uncontrollably. It scared me so much. So i made an appointment with my neurologist who send me to an MRI because he thought i maybe had the willsons disease.

At the MRI they found that my basalganglia are hyperintens. Then it all started. And it did not stop until today, i got 2 bloodtests they where all negative. Only my CK was about 6 points over the norm. Now one year later i had another MRI and the hyperintensity is gone.


At this point, you probalby wonder, what any of this has to do with ALS. I fear ALS because in this last year since june, came a lot of new symptoms. St first, my thumbs would shake when i used my smartphone, it came from time to time. So this went on for a couple of months, it would come and go, but i had overall tremor on my body.
Even my lips would shake when im smiling.
At one point around october, after no doctor found any cause for my symptoms i thought. Okay, this is just my anxiety tricking me again, like so many times before. And i kind of thought about other things. But a few things stayed. The fact that i was shaking, everytime i used my muscles at normal activieties. My arms would shake when i laid on the side. Playing Playstation, my hands hurt very fast, like after a few minutes. So i thought, it was because im so nervous all the time.

Then in Feburary this year. My leg, from one day to the other, started vibrating. All the time, with no pause, for 8 weeks. Also my calve would fasciculate. My feet felt stiff. And i felt overall very week. Then around april. It just disapeared for a while. I was so happy, i thought, if it where ALS it would not stop. (It shouldn't stop, right?)

But it came back. My thumbs got stiffer and stiffer. My ringfinger on the right hand is shaking and fasciculating all the time. All my muscles fasciulate from time to time.

My legs started to feel weak. My legs shake just when im standing. My left foot feels so stiff and it just won't stop. I loved playing videogames. But i hold the gamepad, and my ringfinger twitches and my handpalm, fingers and wrist hurt so much.

I went to doctors from time to time, to weaks ago i saw an internist and she said, "if it started a year ago and you can still walk, and hold everything its almost impossible that this is ALS". Is this true? What if it is a slow progression? She said, my reflexes are a little hyperactive, and i have a little clonus. But at the end she still said that she doesn't believe it is ALS. She did not even send me to do an EMG.

My newest symptom is, that i feel slime in my lungs and i just seem to be unable to cough it out, even with my astmah inhaltors, i seem to not get it out. This is going like for a week now, and it scares me so much. I fear that i suddenly wont get air anymore. (I stoped smoking, after waking up and i felt like i cant breathe anymore).


So, i have fasciculations all over the body, but mostly in the hands and legs. Stiffness and shaking in my legs and fingers. Shaking, in the arms, leg and hands, also when im smiling. I feel overall weaker then usual. I have shortness of breath. I seem to not be able to cough up the slime in my lungs. Sometimes i get food stuck in my throat. And i sometimes, get "yawning attacks" where i yawn for like 5-10 times. I had a vibrating feeling in my leg for months, which i now have not all the time, but mostly when i just walked or stood.

BUT iam still able to do anything. I still can walk, even with my stiff leg. I can stand on one leg on both sides. I can lift heavy things.

So what do you think? Iam completly freaking out. I have an emg appointment in september, i have no idea how to get through this month.

Do you believe i should be scared? The thing that scares me the most, is my stiff feet and my shaking fingers. These symptoms are there even when i feel relaxed and took my medicines.

Iam 28 years old and male.

Thank you for reading this very long text and taking your time. I hope you can answer some of my questions.

 

[KimT]

Sorry you are so filled with anxiety. Most of what you describe can be caused by anxiety or even some of the drugs you are taking. Asthma drugs can sometimes cause a stimulant effect that causes shaking/tremors and even anxiety.

Does your primary care doctor know what you are taking and how much? Have you seen a pulmonary doctor to evaluate your asthma and breathing? That's where I would start.

I see no reason to think about ALS.

 

[piinkman]

Thank you so much for your answer. Its like there are two brains inside my head. One is the rational, logical brain, and the other is the anxious nervous brain.

My logical brain knows that taking 8mg suboxone, 5mg diazepam, 45mg mirtazapin, 1200mg ibuprofen and all the other stuff since years probably gets its tribute from my body.

But the anxious brain breaks my rational thinking, im so over focused on everything out of the norm with my body, that i feel just overwhelmed sometimes.

Yes all my doctors know what i'm taking. But maybe there is the problem. Its not just one, but like 4-5 different doctors. This is because of my circumstances, my addiction, my anxiety disorder and my tourette-syndrome and my OCD.

They all know about my medications, but i'm also taking a lot of my pills on my own.

Im now in therapy since a few months and its helping so much getting my stuff together. But i can't focus on the important things for me because i have this fear in my head the whole day.

I will do an appointment with a pulmonary doctor, thank you. I'm also now trying to stop smoking. I have been a heavy smoker, my primary care doctor said its probably because of that.

This shaking and twitching is just so scary

 

[lgelb]

Sounds like you are pursuing many more healthy paths. Quite likely, the therapy can help you come to grips with the fear, but not sure that these "pills on your own" are going to help. Find someone you can talk with honestly about everything, and you will be a step closer to where you want to be.

Best,
Laurie

 

[piinkman]

Thank you both for you time

but i have a last quick question. On most websites i found about ALS, they said "if you tap the muscle and that triggers that fasciculations it is a sign for ALS" is this true? Because i can trigger the twitching in my calve and the twitching and moving of my thumb, by tapping this muscles. Like it happens everytime i touch this muscles.

 

[grounded]

-- if you tap the muscle and that triggers that fasciculations it is a sign for ALS" is this true? --

Not true for me, nor have I ever heard of this for ALS. Not sure what "most" websites you are looking at??

 

[piinkman]

It where just random websites that informed one about ALS. I where mostly on german sites, they seem to not really know what they are talking about it seems to me.

What if forgott to mention in my very first text is, i also fear i have muscle atrophy because of a "hole" in the ankle of my left foot.

I took a photo of it (sorry because of the dirty floor, this photo was taken at our public swimming pool), is this what atrophy or the beginning of atrophy looks like? It's just on my left foot. I feel like the vibration and stiffness of my left foot comes from this spot, but this could also be my anxiety.

 

[KimT]

If your body twitches, sometimes you can evoke more twitches by tapping that area, but this is not related to ALS. It can also occur with benign fasciculations.

 

[KarenNWendyn]

Photos generally are not helpful to us. Dents and asymmetry are common and nonspecific. Only a doctor examining you can determine if you have atrophy.

As Kim says, fasciculations are not specific. Occasionally they can be brought out by tapping a muscle, but that is not specific for ALS or any other condition.

Ignore twitching and dents please.

 

[piinkman]

Photos generally are not helpful to us. Dents and asymmetry are common and nonspecific. Only a doctor examining you can determine if you have atrophy.

As Kim says, fasciculations are not specific. Occasionally they can be brought out by tapping a muscle, but that is not specific for ALS or any other condition.

Ignore twitching and dents please.

As i have just looked up the anatomy of the ankle, there seems to be no muscles at all at this spot. If this is true, i feel very dumb and this is an important lesson for my anxiety.

I thank you all for giving me some of your precious time and your answers. And out of respect of your forum rules i will not write another post anymore (since you have told me twice that you do not think it is ALS). But if someone else has some thoughts for my case, i surely will read it

I wish you all the very best, and greetings from germany.

 

[piinkman]

I have another question, that i forgot to ask, since my doctor said "you have a little clonus, but you are very anxious" as she tested my reflexes (which where also a little easy to trigger).
So i found nothing about clonus being caused by my anxiety, instead i only seem to find serious causes for a clonus.
I'm feeling a little unsure again, because she clearly said, that she found nothing.
Would you get a second opinion?
Or is it true that my anxiety could cause a clonus?

 

[KarenNWendyn]

I still wouldn’t worry about it. A few beats of clonus can be a normal variant. Clonus is not specific for ALS. To diagnose ALS, one needs to look at the big picture— clinical weakness in more than one region, characteristic EMG changes, pathological reflexes, ruling out disease mimics, evidence of disease progression.

You have anxiety, not ALS.