25 years old. Could it really be...

[Myron]

Hello everyone. My name is Myron. I’m 25 years old, living in the Netherlands. I’ve not been feeling well since late february (the 25th to be precise), and i’m very worried/scared by now. I would like to apologize in advance. It’s not my intention to invade your forum. Im just really really scared. Second of all, I apologize for my broken language and the length of my story (its pretty hard to summarize 4 months of misery).

As I said, it all started on the 25th of february. Really out of nowhere. I was laying in my bed that evening, trying to fall asleep. All of a sudden I felt really weird. I started to shiver uncontrollably, got dizzy (light feeling in my head), short of breath and very weak. It was terrifying. Somehow I managed to fall asleep, hoping it would be over the next day. But it wasn’t. And it has been going downwards fast ever since. I can’t remember having any physical issues before that date. No matter how hard I try. So the onset was likely sudden not insidious.

An overview of my symptoms:

• It started with the symptoms mentioned above.
• Then I started to vomit small amounts (of food) throughout the day and experience more severe dizziness. This has been going on ever since. Like my esophagus isn’t strong enough to push everything through.
• A couple of weeks later I started to experience more digestive problems. Bad stools (very frequent), and pains throughout my belly. The weird thing is that the pains are gone now.
• Since four weeks fasciculations. Widespread, but especially in my nose, left-eye, legs and belly. Are getting worse.
• Some cramps in my legs. Are a little painful.
• Throughout: More and more fatigue (im so tired right now, especially in my arms and legs). Increasing shortness of breath, and weird weak feeling in my throat (like someone is choking me with his/her hands).
• Which concerns me the most is that im not breathing often, and not deep enough (hypoventilation?). This came out of nowhere.

I fear ALS. Could this be respitatory-onset?

I don’t have:

• Confirmed clinical weakness. I do feel very very weak (perceived), but I can’t detect any muscles not functioning at all so far. For example: I can still type, tie knots, push buttoms, write, speak properly, do some push-ups and pull-ups, tip-toes, tip-toes, calf raises, etc. It only takes alot of effort.
• Measured or noticed any atrophy in legs and arms so far. Measuring daily. I would like a doctor to confirm.
• Spasticity, as far as I can detect.
• Slurred speech. Nobody has noticed a change in voice (so far).
• Swallowing issues. Throat feels weird (thick, weak, globus), but I can still swallow without food or drinks getting stuck and coughing.

I’ve had the following medical examinations so far:

• Mutiple blood tests, including magnesium, glucose, vitamines B11 and B12, creatine-kinase (CK). All blood tests have been good.
• Urinanalysis, and multiple stool analysis (including parasites). All good.
• ECG. All good.
• A gastroscophy. Little irritation.
• Ecography of my belly. All good.
• CT-scan of thorax and belly. All good.
• Photo of my lungs. All good.
• Brief clinical exam neurologist (see below).

I saw a neurologist about 1.5 week ago. She wrote the following afterwards: “No indication of ALS/MS, or any other neurological disorder”. However, the clinical exam she performed was very brief (seen alot of clinical exams online) She only performed a small number of basic tests regarding clinical weakness and reflexes. For example: She didn’t look for atrophy or fasciculations. Nor asked about the latter, the shortness of breath or anything. I asked her if I could get an EMG (twice, cause I called her a couple of days later). But she refuses. “No need for that, I’ll only hurt you”. She said the last thing she could ‘arrange’ for me is a MRI of my brain, which is scheduled for friday. I don’t expect anything from it. And after that, she said that I should let it go. However I feel weaker by the day. She thinks its (severe) anxiety/stress. But I think she’s really underestimating my complaints/symptoms. And so do others i’ve consulted. I see her next week for the results of the MRI, and then I’ll ask her again. Else, a second opinion is needed I guess. What do you guys think?

• Does a clean, well-performed, EMG rules out ALS at this stage (4 months into the misery).

I don’t know why, but something inside of me is saying I’m seriously ill. And I really really feel ill. I feel weaker every day. I’m not working anymore. I’m laying in bed most of the day, because sitting or standing up makes me feel so bad and dizzy. Let alone physical efforts (running for example isn’t an option). I can barely sleep. Waking up in the middle of the night due to shortness of breath and the feeling someone is choking me (hands on my throat).

Thank you for those reading this long story. I’m really scared of ALS. For my future. Crying alot. My family and my girlfriend are very worried too. I have no social life right now (and I really had a good one before), and things like my vacation are even on the line. I don’t now how much longer I can take this. Will I ever feel good again?

 

[Nikki J]

Hi

None of this sounds like ALS/ MND. I applaud your neurologist for being firm with you

If you had ALS symptoms yes after 4 months a clinical exam and an EMG would show a problem. Since you don’t have symptoms of MND the question is moot

She would have seen atrophy if you had it. She was looking at all sorts of things that ypu didn’t realize during your visit. And twitches don’t matter if other things are normal

Go back to your primary doctor and let them help you figure this out.

I hope you feel better soon

 

[Myron]

Hi Nikki,

thank you for responding. I really appreciate it. I acknowledge the fact that (the onset, and order of) my symptoms dont really correspond with the “typical” ALS-onset (usually slurred speech or insidious unilateral limb weakness).

However I’m worried about my breathing (pattern) being the first symptom and getting worse (while the scans and photos of my lungs are good), and the increasing fatigue and amount of fasciculations. What I forgot to mention earlier is that I’m experiencing more and more pressure on my chest and lower throat.

- Can you spot atrophy with clothes (pants and a shirt) on?
- I still really would like to undergo an EMG. Even if i’m completely wrong. A clean EMG would comfort me so much, I think.

I hope my neurologist is right, and that I’m one of those annoying stubborn patients (you know, the one who reads tons of scientific sources).

My primary doctor doesn’t know what to make of it anymore. Do you have any suggestions? Could this all be (severe) anxiety or stress?

Thank you once again. You are a good person

 

[Chuckdobro]

ALS- no, anxiety- yes. Please move on. Thank you,

Chuck

 

[Myron]

Hi Chuck,

Thank you for replying. May I ask why you think it’s anxiety? Or why it isn’t ALS. Ofcourse, you don’t have to. Then just ignore this post please.

I wish I could move on. But im feeling weaker by the day. Even standing and walking are getting problematic.

I wish you all the best,

Myron

 

[Myron]

Hi Nikki,

I realize now that I didn’t hit the reply option, but wrote a reply seperately. So i don’t think you got a notification. My apologies if you did.

 

[KimT]

It sounds like you experienced a spontaneous panic attack on the first night which triggered anxiety and a host of anxiety-related symptoms.

Please work with your primary care doctor to figure out a treatment plan.

You don't need to be on this forum.

 

[Myron]

Hi Kim,

Thank you very much for responding. I really hope you are right. The fact that the people replying think/state I don’t have ALS comforts me a little. On the other hand, the symptoms are worsening pretty fast now. Feels like I won’t be able to walk anymore if this continues.

Kim, I got two final questions left. Feel free not to reply if you don’t feel like doing so. I’d understand.

1) Some symptoms do correspond with ALS. May I ask why you think it’s not ALS?
2) Can (severe) anxiety/stress occur that all of a sudden, and really cause so much damage (to the point that someone is nearly bedridden)?

Either way, I wont be posting out of myself anymore. If there are still people who would like to respond/reply, that would be great. Else I will let you guys know when I get a diagnosis, so that people with the same symptoms might have an answer what they’re up against. You guys are the best, keep up the good work.

Wishing you all the best,

Myron

 

[KimT]

1. The way each and all of your symptoms presented are NOT consistent with ALS
2. Yes

 

[Myron]

@kim: Thank you very much for replying.

Update: The symptoms have worsen. I noticed my left leg being significantly thinner than the right one. Also my left thumb is shaking (tremor). What to make of this? Seeing my neurologist tomorrow.

 

[ShiftKicker]

If you are seeing your neurologist tomorrow, these questions should really be asked during your appointment. They have your full medical history, can examine you in person and provide you immediate and professional feedback. We really are just a bunch of strangers on the internet and can't take the place of proper medical care.

You anxiety has led you to this forum, and your research is reinforcing that anxiety despite members here trying to reassure you. My hope is that you will be able to be reassured by your neuro tomorrow and that you will believe them when they also tell you "No ALS".