32 year old female concerned about ALS due to twitching

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ashley1987

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I am a 32 year old female.

Over the last ten days I have noticed an increase in twitching. It started with my back and is now all over my legs. My legs calves and bum twitch noticeably multiple times an hour. Over the last few days random pain, which may be cramping is happening most in my legs.

I went to a walk in clinic and blood tests came back okay. Both doctors who saw me could get no reflex response out of either leg but neither commented on that. The second physician did exercises looking for clinical weakness but it was negative.

I probably sound like most other silly people on here but I'm very afraid I wont see my kids grow up. I've never had anything like this before. The twitching is brutal and now the odd pains with it.

I've come across a few stories of ALS that started out this way and now I'm crying.
 

KarenNWendyn

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Please read this if you haven’t already done so : Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure. It doesn’t matter how severely you twitch.

Under active reflexes are a normal variant and not a concern. If you are tense, it’s harder to obtain reflexes. Anyway, ALS causes hyper reflexes.

You haven’t described anything that would make me concerned about ALS. Twitching can be caused or worsened by anxiety, stress, dehydration, physical strain, electrolyte imbalance. Work with your primary care physician to get your anxiety under control.
 

ashley1987

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Hello
These are the symptoms I've been experiencing and what i know so far. Looking to get opinions from those familiar with ALS if this sounds concerning...

Twitching in random spots usually across lower body but also other areas. Twitching is usually once or twice in one spot then it moves on. Thighs calves bum in both legs are usual.
Developed cramp like pain that comes and goes in my lower arms and calves.
Blood work fine
I get buzzing and tingling sensations in my legs and arms
Strength tests carried out by ER physician and chiropractor normal
Reflexes normal

I'm trying to get a diagnosis but it will take a while to see a neuro.

Thanks for your time
 

lgelb

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No, we're not going to be concerned for ALS, and there may be no "diagnosis" to be had. Reflexes vary and an absent one without weakness isn't going to freak anyone out.

Chiro can itself damage nerves, so be careful.

So we will always recommend in advance of any further appointments that you focus on what may help you feel better, things that most people can do at least one of better, like nutrition, sleep, stress, hydration, exercise and stretching. When you optimize all those things, you are then in a position to deal with any residual symptoms and work from there.

Best,
Laurie
 

ashley1987

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Is it possible to have a good neurological exam and still be diagnosed with ALS? Has that happened to anyone?
 

Nikki J

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No. The criteria for ALS include having abnormalities on clinical exan as well as specific emg abnormalities. The hallmark of ALS is clinical ( found by doctor) weakness. You also need all of the above and to exclude other causes
 

ashley1987

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I went to the ER today. My left left arm had pain and just didnt feel right. I noticed my ring finger would jerk back and forth when my arm was extended. Yet another neurological evaluation, strength testing which was normal. More blood tests... phospherous was on the low side but mag and calcium ok. Waiting on thyroid and lyme testing. Waiting for family doctor appt. for neurology referral. Thinking now I wont see my kids grow up... I need life insurance.. etc. My husband thinks I'm nuts. Dr said she cant rule out Al's but that its low on her list. More tests come back neg the more I think what else can it be?
 

KarenNWendyn

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Ashley, you don’t have ALS. The normal strength testing rules out ALS, and none of the symptoms you describe have anything to do with ALS.

This is not a general health or anxiety forum. You say things like “I wont see my kids grow up,” but you need to realize that your audience here are people here who are actually dying of ALS, our caregivers, and people who have lost loved ones to ALS. It is not fair to expect us to hand-hold your anxiety.

Please keep working with your doctors, and I would ask you not to post further until after you see your family doctor or a neurologist.
 

ashley1987

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My body twitching has subsided significantly but issues with my left hand persist. My ring finger tremors when extended.. sometimes pinky as well. My inner elbow gets sore especially at night. I also get tingling in these fingers and sometimes they are stiff. They dont seem to have lost strength but their coordination is sometimes off. Has anyone experienced this as a first sign of ALS?
 

ShiftKicker

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Mod note- merged threads:

Ashley, please continue using your existing thread. This helps members here see the whole picture in one place and allows people to provide the most informed answers without having to visit multiple threads to see what has already been posted.

Please keep referring back to the pinned post when you want to know about sensations and tremors, etc: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

It is not clear if you are working with your doctors to figure out what is causing your issues. This will always be what is recommended here when you return to post further questions even though people have said it doesn't sound like ALS.
 

KimT

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Ashley,
I understand your concern and anxiety but this isn't the forum for you.
We have limited energy.

I think the best thing you can do is take the advice that has been given and work with your GP.
 
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