Having strange symptoms. Any perspective would be appreciated.

Arayz

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Hello. I'm a 36 year old mother of 2 young children. I'm writing on here because my neurology appointment isn't until July. I've been experiencing what I thought were twitches, but they're mostly unseen. It started above my upper lip, in the space between my upper lip and my nose. I could feel it but not see it. Since then it has progressed to twitches all over my body that sometimes seems so utterly random. There are times the twitches are big enough that I see them (not often), but mostly they're twitches I can't see and they happen seemingly randomly and don't stay in one place very long before moving to another location. They are pretty consistent in revisiting my feet and legs but I've had them in my stomach, back, butt, neck a couple times, back, knees and elbows, etc.

Of course when this started to bother me I Google searched possible causes. I found als as a possible cause and became frightened.

In November I had vertigo for the first time in my life that lasted 10 days. This is most likely completely unrelated. When it subsided I was dizzy and off feeling for months. My doctor and I talked about seeing a neurologist for this reason. I even had a brain mri without contrast because the dizziness would not go away and my doctor wanted to rule anything serious out. The dizziness is currently not as bad but it has been replaced with twitching.

I'm concerned. I was thinking about what I would say to the doctor when I see him or her. It feels like electrical currents in my body, sometimes when the twitching isn't happening but especially when it is. The twitching is very frequent. It goes all day and into the night. I feel it when I wake up at night.

I've since read about fibrillations (sp?) and became concerned about the fact that I feel these twitches or whatever you'd call them but mostly do not see them.


Does any of this sound like als? I've been very fatigued throughout all of this also. No muscle weakness. Sometimes I feel weak in my arms and legs, but maybe it's the stress from being anxious over this? What kind of weakness is of concern? I'm assuming something undeniable.

Thank you to anyone who's read this and answered. I so appreciate your taking the time to do so.

Some other info is that I drink 2 cups of coffee daily for years, no other caffeine sources. I take a multi vitamin and vitamin d. I've been drinking extra water since this started and eating bananas. Nothing stopping it.

My biggest question is: can you feel muscle fibrillation? Unfortunately I read an article that said if you feel a twitch but don't see it, that is very concerning and could be als .... I dont notice anything when I'm up and busy. The moment I sit or am at rest is starts up and it is hard not to feel distressed by them.

Thanks again to everyone who's reading this. I did read the post that you're supposed to read before posting. My fear is getting the better of me and I didn't see clarification on fasciculations vs. fibrillations. Hope I'm within the rules.
 

Nikki J

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Hi. You can not feel fibrillations. Fibrillations that you read about in ALS are seen on emg and involve a single muscle fibre. They can not be felt nor can they be seen with a naked eye.

There are no kind of twitches that are uniquely ALS. What does happen often with ALS is the patient goes to the doctor for their noticeable first symptom ( usually weakness) and the doctor notices twitching. This mostly happens because twitching is the least of our problems.

please read this Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms
 

Arayz

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Thanks for clearing that up. I will go to my appointment and hopefully find clarity. If I wasn't twitching all the time, my mind wouldn't spin out out way it has been. It just seems constant, a few minutes in between the twitching at the most (unless I'm moving). I could visibly see them this morning. I'm usually clothes so can't really tell if they're visible or not. I know I have both visible and not visible. Again, I appreciate your time and I'm trying to hope for the best. I reread the post you attached. I apologize if maybe I shouldn't have posted anything. I'm going to just patiently wait for my appointment. Many thanks to you and this community.
 

Arayz

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Hello,

I'm hesitant to write again. I don't wish to be disrespectful. I'm just so anxious. Please forgive me. My anxiety has been very challenging. I went to my primary care physician. He wants me to keep my appointment with the neurologist, but he thought it was unlikely als because there is no weakness causing me to fall, drop things, etc. When I was dizzy for months, right before these twitches, I fell a couple times. My dizziness has gotten better with occasional bouts. I'm getting blood tests to check my calcium and magnesium, but meanwhile I'm having a hard time ignoring these twitches. They're all the time, even when waking from sleep. They're widespread, mostly concentrated in my legs and feet.

The other thing is tremors. If I put the slightest weight on my right shoulder, it almost immediately starts to shake. Why did I forget to mention this to my doctor? My muscles have been sore also, like I've been exercising but I haven't. Maybe not related?

Some twitches are little quick pops while others are full spasms, sometimes lasting 10 min. Or more.


I was emotional at my doctors appointment and feel I didn't do myself good service in remembering all I wished to say. I'm frustrated my appointment with a neurologist is so far out.

Are there other conditions where twitching is common? I read als can manifest differently in the beginning for many people.

I so apologize if I shouldn't be posting this. Truly, please forgive me. I've reached out to a psychiatrist about anti anxiety meds.

Does any of this sound like als to you?

Thanks for reading. I'm sorry if I'm not supposed to write anymore. I understand my neurologist appointment will give me better insight.
 

ShiftKicker

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Hi Arayz,

It must seem logical to you to post on a forum that exists to support those with ALS and their caregivers in order to seek reassurance because you are afraid of having it- however, the people here don't see it. If you reread the above linked post provided, and are able to really take in what it says about things like dizziness, vertigo, episodic symptoms, electric current feeling, etc, you would be able to leave the forum behind. It is not a healthy place to dwell in order to seek reassurance, as it will only keep ALS foremost in your mind, despite what the pinned post says. It is good you are seeking proper support via a psychiatrist while you wait for your neuro appointment.

Please take care, and please also let us know how your appointment goes after you see the neurologist. It is really helpful for all those who find themselves here when they search for twitching online.
 

lgelb

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It doesn't matter what you forgot to tell your doctor. If you had deficits in function, they would be seen. Some of the things you mention can be seen with a benign form of tachycardia and hyperventilation, so if your BP and/or pulse are on the high side, a low dose of a beta blocker or calcium channel blocker could be something to raise with your PCP. Hydration and electrolytes are also something to monitor. People under stress tend to carb load, which can make hydration and electrolyte imbalances worse.

To answer your question, the most common condition in which twitching is prominent is benign fasciculation syndrome, which is very common and very troublesome to those who become obsessed with the idea that it is ALS, a much rarer disease, instead. Don't be one of those people, who waste their healthy days and nights on a fantasy.

Best,
Laurie
 

Arayz

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Thank you both. I'm taking what you both said to heart. I appreciate your responses and the kindness you've shown me. I can't really even put to words how much it means to me.

While I wait for my appointment I will be seeking out anxiety meds like I said. That coupled with your responses will help me with the wait. I will try to not spiral or get stuck. And I will come back and post after my appointment. Again, any thanks.
 
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