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Jan 19, 2019
Hi Everyone:

I am a 33 yo female. I am scared I might have ALS. My right toe started twitching after initially developing exercise intolerance and cold feet. My knees felt tight from behind and I was having a muscle spasm in my right knee/thigh. I still get that spasm upon too much exertion. Anyway, now all my toes on the right leg do this, and my doctor tested me for hyperreflexia yesterday. My hands have started feeling weird like I can see a little muscle twitch and then it gets sore to use on both right and left. Also, I have twitches followed by pain to the touch sometimes in my arms after they have been used. And sometimes feel weak. I also have eyelids that twitch and am very fatigued. When I did the tests yesterday morning, I was able to stand on my tiptoes and walk on my heels. However, with the presentation in my hands and arms now and my left foot starting to do the same thing as my right foot, I am totally freaked!

I have a brain MRI sometime next week and a NCV/EMG in about 4 weeks. It sounds stupid, but I want to be able to wear my heels again without the pain behind the knees and thighs, etc... I feel all this weakness after some exertion. I have so many dreams, but I am scared they will be drowned in the toilet. I have been a total mess!!
You say the doc tested your reflexes. What was the result? What was the concern for the doc, that led to ordering the tests?

ALS doesn't present all at once on both sides, legs as well as arms, etc. This could be anything and nothing. The tests will shed more light. But I think that your ALS fears are unfounded. And if your biggest problem right now is not being able to wear heels without pain, I think you can see the difference between your condition and that of others here, pretty easily.

I have some hyper in elbows and knees. Also, it was because I feel worse on one side than the other that he decided to order the tests. He said he has some ideas of what might be going on, and that he wants to do the EMG to rule out ALS possibility, but he won’t tell me the other things because he doesn’t want me going online and reading about them.

I feel off balance after a certain part of the day, and my toes on my right foot twitch under and up a lot. We will see what happens. The twitches seem to be all over, but more “stuff” on right side.

Thank you all for your time in advance. I honestly hate coming here, and I was going to avoid it until yesterday.
Twitching is so common as to not be diagnostic of anything. 70% of healthy people twitch. What exactly is it you are unable to do? The main symptom in ALS is not twitching, it is weakness in a muscle or group of muscles. So, if there is no weakness, how did you come up with ALS? I just don't see ALS in what you describe.
My arms will feel weak (right now particularly the right) and like I can’t hold a coffee cup for long, and everything started with my foot. I can’t exercise as I feel like everything is very heavy and the spasms in my leg get worse. I can feel my toes twitch and drop in my shoe. I can’t hold up my right ankle as long as I used to. My right big toe twitches up to the top of my ankle and then sometimes the entire foot has the toes twitch down and the foot shakes. If I wear something that presses too hard on the toes, it wants to twitch out of the shoe. I have twitches that happen in both my biceps that happened prob about three weeks ago, and are ongoing daily. My back, hips, etc.... . I can feel the fascularions in my feet every time I put them up. Legs feel shaky. After I drive or walk, can tell they are worse. Middle of palms feel sore and sometimes like there are pulses all in them. Twitches in shoulders. Feel like I can’t lift things as easily. I was very active before this. So worried.
I should also mention that I didn’t feel twitches at first but a lot of tightness behind both knees and then the twitching/spasm started happening in my knee and calves and then the foot thing started at first with cold feet. Really weird stuff. And now the left knee is having a spasm and that foot is starting to do the same thing.
There are many causes for twitchy/stiff muscles, and feeling weak (which worrying about twitches only makes worse; worrying is exhausting). So I am sure your tests will be reassuring in that regard.

We have provided our opinion. Please don't add any more posts about your symptoms; it helps neither you nor us.

While you wait for your tests, stretching out morning and night, reconsidering your diet and hydration, focusing on refreshing sleep and reducing stress, could do no harm. You could also try a dab of magnesium lotion on one of the painful areas.
Echoing others, nothing you have written suggests ALS. I am sorry you are worried, but ALS should not be of concern to you. I will say it again, zero of what you have stated as your symptoms suggest ALS.

Take good care and good luck to you in your diagnostic journey.
I went to neurologist, and the EMG/NCV was clear. I am waiting for brain MRI.

I have twitching all over....right foot is getting worse in terms of the toes curling under when placed flat. I know they did the right foot with the EMG/NCV, and he said it was clear. So I assume it cannot be ALS? Now the right hand has a pinky that is twitching and constant.

I also feel the joints crack everywhere on me - shoulders, elbows, etc.... and the fatigue has gotten worse. I have two fingers that will not move separately when I wiggle them. I am so scared.
Yes, a clean EMG with your symptoms takes ALS off the list.

A diagnosis takes time. The good news is that whatever your issue, it does not appear to be ALS. If the MRI is negative and the problem does not seem to be neurological, it could be time to go back to your PCP and talk about any systemic possibilities that are still on the table.
Thanks! You are all so kind.
Yes, a clean EMG with your symptoms takes ALS off the list.

A diagnosis takes time. The good news is that whatever your issue, it does not appear to be ALS. If the MRI is negative and the problem does not seem to be neurological, it could be time to go back to your PCP and talk about any systemic possibilities that are still on the table.

So since I already felt like I was having weakness and twitches, that would show up on the EMG if it were nerves? Just trying to understand what it is with people who have negative EMGs and later positive ones.
Those people invariably had abnormal neurological exams- where the neurologist detected issues regardless, and it was obvious there was something serious going on. Please go back to your neurologist if you have any further questions about your particular symptoms, as they can tell you what they have observed and where they think you should go next.
As ShiftKicker points out, if you have actual ALS symptoms, like weakness that comes from motor neuron nerve death, the neuro sees it, as well as and most often in the same time frame, the EMG. The EMG is part of the diagnostic process for many possible problems, but not a substitute for a neurologist.
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