Could this be ALS?

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hopefullynotmnd

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Hi,

I'm glad I found this forum. Here's my story:

Part 1
I'm in my 20s. Almost 3 years ago during lockdown, I started having muscle twitches in my eyelids. Weird, constant, sometimes annoying. It first lasted for a few weeks or months probably. Moved from one eye to another, sometimes both. What's to note is that if I wanted them to twitch, I could make them twitch by moving my eyes or shutting my eyes strongly. This info might be relevant later.

Part 2
As time went on, I started having more and more muscle twitches which I now know are fasciculations. Hands, feet, shoulders, back, face (a bit more rare though). Everywhere really. Fingers and toes. The eyelid fasciculations kind of stopped, then returned, and so forth, and now they're off again.

Part 3
These symptoms worried me. Time went on. It's now September 2021 and I'm thinking I might have some issues. Twitches/fasciculations all over. Including behind my ears. It's now 2022, I don't remember the exact month. Probably summer. I went to do an EMG after I went to a neurologist who said it could be MND but we don't know. My symptoms have really just been these fasciculations. I don't feel weaker. I can speak, swallow, eat and do whatever. I don't know how to properly figure out if there's muscle weakness or wasting, but it doesn't seem so.

Part 4
The EMG result was fine. The doctor said she doesn't believe it's ALS/MND. We spoke a bit about vitamins. By the way, I have had severe vitamin D deficiencies. But no fasciculations at the time. The blood work I did says my OH Vitamin D levels should be above 30. Mine were 7-ish at first. VERY LOW. But I took supplements and got them to over 25. I had no fasciculations when I found out about my issues with vitamin D. This was October 2020 (finding the vitamin D thing). Back to 2022, the person who ran the EMG said that it could be from vitamin B12. My levels are above the minimum, around 210 or so. She said that levels should be above 400, even if 210 is above the lower limit. That was pretty much the whole discussion. She told me to probably get another EMG in 3-6 months.

Part 5
Fasciculations continue. Legs, hands, behind the ears, fingers, toes, everywhere. No tongue fasciculations, since apparently this is relevant information. I think it's been about two years with overall fasciculations. I'm taking vitamin D supplements (spray, since that's best). What's going on?

Here's something else that's potentially important: besides having muscle twitches at rest or randomly, I can also sort of force them to happen. For example by moving suddenly. Let's say I'm laying in bed. I quickly move and turn over to the other side. I'll get fasciculations for a while (seconds/a minute) in certain muscles that involved moving, such as shoulders. Also if certain body parts are sort of pressed, fasciculations may occur. For example because of socks pressing. Or when sitting down, fasciculations right where the chair meets my feet and presses them. If I stretch like really strong, all my limbs and so on, there will most likely be some fasciculations. Again, there are loads of fasciculations at rest too. Sometimes they're strong, sometimes they're almost non-existent, and then they return again.

PLEASE ASK ANY QUESTIONS YOU MAY THINK ARE RELEVANT

Thanks!

Thanks!

Fasciculations are daily
 
Please make sure you read here: Read Before Posting

In the link you will read that twitching on its own does not indicate ALS. You've been twitching for almost 3 years and have not developed any of the issues that might indicate a cause for concern of ALS. It sounds like you have a diligent and involved doctor- so you should believe her when she tells you she doesn't believe it's ALS. Twitching is very common and can indicate anything from overexertion to vitamin/mineral deficiency to systemic issues, and so on. You'll have to check back in with your doctor to figure things out, but ALS does not start with 3 years of twitching and no other issue.

Please take care
 
How are: stress levels, anxiety, do you have tics? Also, have you looked at possible side effects from any meds you're on?

Unfortunately we can't do much to help you figure this out.
 
Don't mean to pile on. I composed this off line a while back for another
twitcher but it got closed before I could post it.

Twitches (fasciculation) can be caused by so many things in your
personal life you may not realize… anxiety, energy drinks, some
supplements, caffeine, too much sugar, medications, antidepressants,
sodas, vaping, anger, agitation over something, poor sleep, over
exertion, over exercising, stress and more.

There is no way we could ask every “Could This Be ALS’er”
to reflect about their personal habits, life style, eating habits and etc
then have them post lengthy descriptions.

Of course, Dr. Google seems to believe twitching is one of the first
signs of ALS. Then we see young people in their 20s, 30s and even
some teens coming here scared, horrified, terrified, freaking out
they may have ALS. And many… before they have seen a doctor.

Dr. Google has messed the heads of some they still question their
PCP, push for a Neuro appointment, then question his/her exam
and consultation… back here with more doubt and questions.

Hope this somewhat appropriate here. Maybe helpful
 
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