could this be als

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Kristenmarch

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Hello-I am a 37 year old very active and healthy female, mom of 3. Out of nowhere, on January 5 (3 mos ago) I developed sudden numbness and tingling in my hands and feet, along with intermittent trouble swallowing. Over the course of a week, the tingling spread to many areas of my body, and I have constant fasciculations, especially in my right bicep.

I saw my primary and a neurologist, and was given a diagnosis of a cervical disc herniation and mild stenosis per mri results. I also had an EMG done which was normal. However, the past 2 months my symptoms have progressed. The numbness and parasthesias have somewhat subsided, but My muscles shake whenever they are flexed, and my spine also "catches" and "cogwheels" when I bend forward along with my neck and limbs.

My hands and arms feel very weak, but I can still do everything I need to. I always feel like my swallowing is off now, and sometimes worse when I eat. i can still eat normally, but do cough/choke sometimes. On top of this, just feel very unusual and uncomfortable all the time, including shaking sensations, constant twitching and fasciculations, daily exhaustion/fatigue.

My neurologist also ran extensive blood rule and told me she ruled out autoimmune conditions and MS. Given the constant fasciculations, trouble swallowing, weakness and shaking whenever any of my muscles are used, does this sound like it could potentially be als?
 
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Hi Kristen,
Please start by reading this through twice - there is a lot of information in here, so go slow and absorb it.
It should answer all your concerns.

Great news is that whatever is going on, you aren't even close to describing ALS.
If you work with your doctors I'm sure they will get to the bottom of things with you.
 

lgelb

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The normal EMG and function, coupled with the issues you report, do not at all suggest ALS. I would work with your PCP, but since in-person visits are not recommended these days, also see how far you can get with stretching, nutrition, hydration, and more attention to work/bed positioning (how old are your mattress and pillow? how supportive is your computer chair?) sleep, and stress. If you are right-handed, the right bicep's being a focal point suggests your work ergonomics might not be all that, or that your lifting mechanics with burdens like kids might need tweaking.

There are more free exercise and mindfulness streams to check out than ever, and you can experiment with ways to help your swallowing, like drinking before eating, smaller bites, etc.

Sometimes your body just wants some love. I am not saying there's nothing clinically wrong, but there's no harm in testing the hypothesis that there's not.

Best,
Laurie
 

Kristenmarch

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Thank you for your reply. I have been so concerned due to the weakness, catching sensation/cramps/spasms in all of my limbs, the constant fasciculations (some I can feel and some I can just see like in my neck) and on and off trouble swallowing.
 

lgelb

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I understand, but it's not an ALS picture, a very good thing. Why not do a telemedicine visit and discuss this with your PCP?
 

Kristenmarch

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I had a second opinion via virtual appointment with a new neurologist today who was wonderful. He was able to see the “shuddering” muscles spasticity as well as the hyperreflexia. I did not have any notable fasciculations during the appointment but of course they’re going strong now. When Covid slows down he wants me to come in person for an appointment but said he did not see any flags for anything in particular but was able to see the spasticity, hyperreflexia, and noted the fasciculations which is a combination of upper and lower motor neuron signs. Any thoughts would be appreciated
 

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Great news - if he thought you had a terminal illness you would be brought in for testing. Now is the time to let this go and look after yourself as best you can during this trying time the world is experiencing. I wish you all the best.
 

Kristenmarch

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Great news - if he thought you had a terminal illness you would be brought in for testing. Now is the time to let this go and look after yourself as best you can during this trying time the world is experiencing. I wish you all the best.
Thank you. I guess my last question is- I had my emg done in mid January before I had some of these muscle and spasticity symptoms I’m experiencing. Could it have been done too early to detect anything going on?
 

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No, it was not done too early. EMGs pick up signs of ALS long before symptoms appear. Great news is that you no longer need to fear ALS as you have now had several answers stating nothing you are posting sounds like ALS. Good luck to you and take good care.
 

Kristenmarch

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Thank you for taking the time to answer my questions. I have been so incredibly nervous as my neurologists still can not find the exact cause of what is going on. I have many of the als symptoms which is what brought me here.
 

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Please go back and read the post I directed you to right at the start.
Here it is again:

It states very clearly that the EMG cannot be done too early.

That post is our official position and should prevent us having to type the same answers over and over. I know you are incredibly nervous, but please some of the people you are asking here are breathing with machines, and using their eyes or a toe to operate their computers as they are completely paralysed.
You have no ALS symptoms, so you are good to go. I truly wish you the best, but we can't do anything more than your doctors already have.
 

Kristenmarch

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I meant no disrespect and thank you for your time
And information. You have been most helpful. Sending light and blessings to all.
 

lgelb

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There is only one ALS "symptom" that means anything in diagnosis, and that is loss of motor function, which you don't have. I am sure with the neuro and your PCP behind you, you will find some ways to feel less "unusual and uncomfortable," perhaps including PT given your spine issue.

All the best.
 
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