hopefullynotmnd
New member
- Joined
- Feb 2, 2023
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- 1
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- Other
- Diagnosis
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- RO
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
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