Please help - I’m very concened

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mimimi124

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Background info:
Female, 20
No prior major health issues
No nutritional deficiences
No signs of inflammation (according to CRP levels)
Weight: 45kg Height: 158cm
Always been skinny but lost some weight recently (around 3-4kg if i had to guess)
Taken Covid test, came back negative. Fully vaccinates, first dose with pfizer and second dose with moderna.

Onset: for fasculations, several weeks maybe a few months. Majority else around 2 weeks.

Symptoms, rated with stars (*,**.***) for how major the issue is:
(Note: some of these idk if it’s related to this issue, it might be completely unrelated for ex. cold sweat)

Loss of balance (**): This is pretty clear to me. Standing still i find myself swinging and when walking I’m so much more clumsy. In general my gait is worse.

Weakness and numbness in legs (***)

Weakness in arm/hand specifically left one (***): Find it hard to type on computer, type on phone and in general my hand feels incredibly weak like it’s giving out

Muscle twitching and fasculations (***) random locations

Shortwhile needle-like / pin pain, random locations mostly legs (**)

Tingling and prickling in hand and feet (**)

Dizziness at times (*)

Fuzzy, ‘not awake/not really there’ feeling in head (**)

Eyes can’t focus (*)

Extreme fatigue (**)

Loss of appetite, was worse slightly better now (**)

Muscle spasm (***) Without pain

Sore muscle in upper left bicep (*)

Thickened throat that has now became better. Unsure if related at all. (*)

Stiff neck (*)

Sweat in palms, fingertips and bottom of feet. Not related to activity. Water-like sweat, not smelly type. (*)

Cognitive decline: harder to remember words etc, communication with others is slower. (**)

These haven’t come all at once but been noticing more. Some are very subtle while others are stronger.

Thank you so much for reading! I hope this is not a bother. I don’t want to bother anyone.
 

lgelb

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I don't see any reason to think of ALS, but would see a physician (or check back in, since it sounds like you have bloodwork done), since this sounds like something systemic. Even Covid tests are not foolproof, especially if you only did one. But there are other viruses, including flu, that we would most often think of when there is a constellation of issues such as you describe.

Best,
Laurie
 

mimimi124

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Thank you. I will be doing another covid test to check.
 

mimimi124

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One question, if anyone doesn't mind: I heard about nerve filaments (if I got that correctly) rises before or during onset? What would that mean?
 

Nikki J

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Neurofilament levels rise before onset of ALS. In the US they are still considered experimental. They are also nonspecific as a rise is seen with other neurodegenerative diseases and also with acute events like head trauma. It can be tested in blood but spinal fluid is considered a better indicator by the doctors I know. I don’t know if it is being used clinically in Norway.
 

mimimi124

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Oh okay, i see. Thank you for the answer. Would these levels then drop as it progresses, is there information about that?
 

Nikki J

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No. It appears that after the initial bump pre symptomatically that in ALS it stays stable but elevated There is some indication from one of the genetic trials that treatment may cause the level to drop but that is not natural history. Please ask your doctor any more questions
 

mimimi124

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Checked for covid, it's not. No infection either. My symptoms have progressed to sore muscles though and I think when I wrote this post, I was dwelving into everything while when I think back to it, my symptoms are: fasculations, asymmetrical spread (starting in my left leg) and muscle wasting (causing sore muscles/muscle aches and muscles are not healing from straining, losing weight while becoming squishier in areas lost muscles)
It's really sad how it's developing and how it's progressing, I am so young :(

I am sorry if this is a bother. I am just really down and it's very hard to get access to doctors right now.
 

affected

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Please, you just won't convince us with these non ALS symptoms.
I'm sorry it is hard to access doctors, but you really must go get help from someone who can sit down with you as we can't keep reassuring you here.
It is not appropriate to ask the terminally ill about this continually. I know you are very young, and probably don't realise just how wrong that is, but I would kindly ask you to seek help immediately and block this site for your own sake.
 
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