Very concerned… Could this be ALS?

[Scaredmama]

Hello all,
I’m a 29 yr old mama of a 2yr old and would greatly appreciate some advice and/or insight as to the likelihood that my recent symptoms point to possible ALS. I’ve been getting mixed messages in regards to sensory symptoms not typically being involved in early onset ALS, while other sources, including my doc, say otherwise?

I have an EMG scheduled in August, but in the meantime I’m experiencing new and changing symptoms that have left me with anxiety and fear of the possibility of ALS.

The onset of symptoms began 3 weeks ago. I was using a garden trimmer tool repetitively to prune a tree, with overhead motion and basically an action that would cause some sort of repetitive strain injury I would assume, which I then felt both arms become very weak afterwards and couldn’t lift a thing. I figured the weakness would go away and was only due to me not being in the best of shape. But over the next week or so, I also felt numbness/tingling in my right arm going down to my fingers, which then moved to my left arm too. My left leg is numb as well with occasional cramping in calf and foot. I also noticed my pinky finger showing the “Wartenberg sign”, abducting from the rest of my fingers, along with a tremor.

Then to make things more scary, I started having widespread twitches and jerks all over my body. The numbness has resided for the most part in both my arms, but my pinky and ring fingers in both hands are feeling very weak and “clumsy” when pinching things or writing or doing small tasks. My fingers feel stiff and hand and fingers are cramping. My pinky fingers get locked when I curl then inwards towards my palm and my ring finger and middle finger feel like they’re being pulled with it. Which worries me about the ulnar claw hand which presents in ALS cases that I’ve seen.

Should I be concerned about ALS??
Any thoughts appreciated so much🙏🏼

 

[lgelb]

No, I don't think you have ALS. The wide span and nature of your symptoms argue otherwise. The timing points to the possibility that you damaged your spine while reaching up to prune the tree, and/or that the vibration of the trimmer [if electric], if you were not used to it, contributed. Most likely, your symptoms will improve with time and maybe PT. But if you experience a continuing inability to move anything, or the numbness does not improve or worsens, I would try to get a spine MRI sooner than August.

Best,
Laurie

 

[Scaredmama]

I really appreciate your response, Laurie. It does feel like my symptoms are residing in my hands/fingers. Although, my arms still feel weak to raise them just as they felt right after pruning the tree.

My biggest concern now is my left leg still feeling weak, numb and tight for a month now, which I’m not sure if that even relates to my recent arm symptoms that developed around the same time. I noticed that my left calf is 1/4” smaller than the right, which brings back my ALS concerns about muscle atrophy.

Would atrophy only be present after immobility of the leg for some time? I can still walk and have strength in both legs, just feels more difficult to walk with the left leg.

Again, thank you for your time and would appreciate any thoughts on this🙏🏼

 

[lgelb]

That is correct -- atrophy in ALS follows the death of motor neurons, so clinical weakness would be experienced first. And none of the PALS here had to wonder about a 1/4" difference -- the signs are much more profound. None of us is completely symmetrical.

There is still no reason to think about ALS. Again, I would ask about PT.

 

[affected]

If you have a good read through here, you should find a lot of comfort and relief of your concerns. PALS don't feel weak, they simply can't do things yet feel normal.

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

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

If you go back and tell your doctor of your concerns you can get the best advice and path to diagnosis and treatment.
All the very best.

 

[Scaredmama]

Thank you both for addressing my concerns. I have thoroughly read through the informational post which did give me some reassurance as well.

Although I did want to mention that the difference in calf size is actually 1/2” instead of 1/4”, which is slightly more concerning. But if I’m understanding correctly, if I don’t have any true weakness/loss of strength while walking or moving the left leg, then it still shouldn’t be alarming at this point. Unless there is some pinched nerve issue in the affected left leg that can cause such atrophy?

The most bothersome symptoms now are the numbness in left leg/foot, and both arms feeling fatigued. I still feel occasional widespread twitching and cramping.

I was able to reschedule the EMG to tomorrow which I am very nervous about, but hoping the results will relieve my ALS concerns.

Thank you all again for your timely and considerate responses🙏🏼

 

[affected]

I do hope a clean EMG puts this to rest for you.
A difference in size of half inch is nothing to suggest you are dying, nor does it mean it is atrophy.
Let us know once you have a diagnosis for sure.

 

[Scaredmama]

Hello everyone,
I wanted to relay that I received Normal EMG results today with no indication of any nerve damage - not even an ulnar or neck issue which I had suspected due to my hand/arm symptoms. My left leg showed no signs of nerve issue either causing the numbness.

So, basically ALS and pinched nerve conditions were ruled out, leaving me without a solid diagnosis of what’s been going on.

I’m not sure if a spinal MRI would reveal anything that an EMG would miss? I have an upcoming brain MRI to rule out MS but even the Neuro doesn’t think that’s the likely cause. He mentioned it’s possible to have an injury that doesn’t show up on EMG causing symptoms, and more importantly that health anxiety could’ve potentially exacerbated my symptoms.

Having a clean EMG and the reassurance of many, including this forum, puts my mind at drastic ease going forward. Hopefully with time, and excluding the stress about ALS now, I will find more relief with my symptoms.

I greatly admire all of you who are dedicating yourselves to providing relief to people like myself and so many others through what usually ends up being unnecessary panic. I greatly appreciate your time and guidance and wish you all the best🙏🏼

 

[affected]

Thanks for letting us know, I'm so pleased you have cleared this and can keep moving forwards with your doctor towards full health.

 

[lgelb]

Yes, a spinal MRI can see different things than an EMG, but the odds that it will show nothing interesting are greatly in your favor from what you have said.

 

[Scaredmama]

I understand that an EMG definitively rules out ALS, but are any signs of MS seen with an EMG or clinical eval with a Neuro? I remember my Neuro saying he didn’t think there would be anything seen in a brain mri. I’m not sure how he could assume this when MS is not ruled out with an EMG?

There was no nerve damage seen and no weakness found. Would these need to be present to point to MS? And is MS onset similar to ALS in that it occurs in one limb first and spreads?

I know this is not ALS related, but I’ve seen some expertise about MS throughout this forum and would appreciate any thoughts about the likelihood of MS given the sudden timing and nature of my symptoms.

 

[lgelb]

Yes, a neuro can see signs of MS so that was probably the basis of the comment. As you note, this is not an MS forum. I suggest you direct your inquiries there.

 

[affected]

I think it is time to go back and discuss all these concerns with your doctor.
You really are cleared of ALS, and we are thrilled for you, even if you still have to find out what is going on.
All the best, I hope it is all something treatable.