Very scared my husband may have something seriously wrong, I fear it could be ALS

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New member
Dec 29, 2022
Learn about ALS
Cuyahoga Falls
Hello. For the past couple months, my husband and I have had some debilitating anxiety over some new sudden symptoms he’s been experiencing.

He says that his left calf seems to be twitching a lot from within. Nothing he or I could see outside of the body. He mentions his left leg feels heavier than his right. He can still walk and perform normal day to day activities. He’s say it doesn’t really feel like the strength in it has changed but the way it’s twitching is something he says he’s never really experienced before. He explains that walking is different because of it. Doesn’t have the same “spring” in his step with his left leg or says it doesn’t seem to work as well as the other. But says it still feels strong for now. I don’t see that he’s walking any differently at all on the outside.

He’s also been experiencing some shortness of breath with pulmonologist not able to find the cause. The shortness of breath started 2 months ago and now the leg issues. We read that symptoms of ALS can present 2 months apart. So that’s really scary.

He says he is also constipated and started around the same time the leg issue started. He never struggles with toileting issues. Says he feels as if he can’t get it out but can still push.

He has also lost some weight as well and worries this can be due to ALS.

He wakes up with his left leg feeling heavier or wanting to “give out” type feeling. His bloodwork has mostly come back as normal besides low cortisol levels.

He also mentions he sometimes feels twitches in other places in his body but mainly in the left calf. He is downright petrified (as am I) that he may be having the beginning signs of ALS.

Nothing else really seems to make sense to me, and of course the internet brought up ALS.

He is a 30 year old male. Caucasian. Tall and thin. Very fit and active.

Seeing neuro but they didn’t have anything soon so we have a long wait before he gets seen. Just looking for some insight. Our Christmas was awful due to all the stress and worry. I’d appreciate any feedback.

Thank you for your time.
If he had lung function tests that were normal, it's hard to see that ALS would be causing the shortness of breath. And despite what you have read, it would be very unusual for respiratory impairment to follow the first limb signs of ALS by only two months.

Wondering with what you describe if he has been screened for a blood clot in his leg/lungs? I would contact his PCP to discuss possible testing.
Hi Jay, sorry you are going through this.

You said the pulmonologist couldn't find any cause, but did they find anything actually abnormal on examination or FVC testing?

Twitching and feeling weak are not indicators of ALS. Please carefully read the resource named READ BEFORE POSTING.

The internet bringing up ALS doesn't mean there is any increased chance he has it. PALS feel quite normal and just can't make their muscles respond.
Thank you for your time and response. He had an ultrasound done of his leg and that came back normal with no blood clots. And also the shortness of breath was first and then 2 months later the constipation and leg issues started.

Thank you for your time and response. He had a bunch of different tests done. PFT I believe and a cardiopulmonary test. And some other ones as well. Those were normal. He’s also had chest X-rays and blood tests for Troponin which came back normal. He does have low cortisol.

He feels normal and can do normal stuff. His leg just feels different than his other, heavier with sensations he’s never felt before. He also mentioned that he had some bad lower back pain with a pulsing that lasted awhile but oddly went away a day or 2 before the leg issues started.

You don’t believe this could be related to ALS? And is 30 young for a disease such as this? Anxiety is through the roof like no other.

Thank you once again for your time.

Normal pfts rule out ALS as a cause of the respiratory symptoms
the back pain even if it went away that preceded the leg symptom suggests a pinched nerve scenario. I would be asking about a lumbar mri rather than pursuing ALS. 30 is very young for ALS. Yes it can happen. It is more often genetic and also those who are younger tend to be on social media more so they make it seem like it is more common than it is.
you are both hurting yourselves by focusing on ALS and trying to drive the workup toward neurology.
Sorry I reversed the order of respiratory/leg, but the point is the same. Respiratory/limb problems do not start that closely and a PFT would show is there were a problem affecting the lungs directly.

Since a DVT has been ruled out, I agree with Nikki that a lumbar issue is worth pursuing.
It truly seems like ALS is completely ruled out which is great.
Do work with his doctors and try to take your cues from them on what might be going on and what paths to take diagnostically.
Thank you so much for your response. I have a few other things I’d like to mention.

He also has noticed hyperreflexia in his left knee and it’s scaring him. He still has all strength, walking normal, says it just feels weird inside. Lots of twitches. No tripping, stumbling, or anything of that nature. He says the twitching and weakness began at the same exact time. Twitching is continuous with some happening all around body but mainly focused on his left leg and bottom of left foot.

He can still lift our 4 year old (35lbs) with just that leg. Also complains of faint tingling here and there.

He is highly concerned and these symptoms with his leg all have happened all at once and have been this way for the last 5 days or so. The hyper reflexes really have him scared.

I am only trying to comfort him and myself in this time while waiting to see a neuro. I feel so awful seeing him go through all the anxiety to the point where he just shuts down.

Thank you for your response and time. His lung functions test from yesterday looked normal. So that’s a good sign.
You can’t “ notice” hyperreflexia nor can you test yourself It is found if it exists on a clinical exam by a trained healthcare professional. It is also quite common in healthy people and especially likely if one is anxious.

you also say he has not lost strength then you say he has weakness. Weakness by definition is loss of strength. It isn’t a feeling. again I suggest seeing about a lumbar mri. see his gp
He has a hard time describing the exact feeling. And yes, he plans to have his back looked at.
No, not ALS at all. Please continue to work with his GP. Thankfully, his symptoms point away from needing a forum such as this.

Good luck to you both.
Goodness me, 5 days of feeling a bit strange and you both think he has a terminal illness?
Please, enough, work with doctors that is the only way you will solve this but it is not ALS.
Read the resource titled READ BEFORE POSTING as I can tell you have not taken the information in.
All the very best, but we can't help I'm sorry.
Wow okay. I am sorry to have offended anyone here. Simply was asking some questions. We all experience anxiety in different ways. And no it hasn’t been 5 days and the post you’re referring to looks to be 6 plus years old. Not trying to argue. Appreciate the tip. You will no longer hear from. Deleting membership now. Thank you and good luck.
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