Concern for loved one

[hope4answers]

Hello, all.

I’m writing on behalf of a loved one. About three months ago, he developed weakness in his right leg and arm. It seemed to only be happening after more strenuous activity, so we didn’t think much of it.

Now it seems to be a bit more prevalent. He can’t run without a significant limp, but walking is okay. He can’t do push ups either.

No other symptoms of concern except for fatigue. He never seems to be rested enough.

There is a family history - his father passed from ALS. We were told his ALS was not genetic, but sporadic. His sister chose to be genetically tested and is not a carrier.

As someone who loves him, I am very concerned. Do these symptoms sound concerning? He has a neuro appointment but they couldn’t get him in for several more months.

 

[hope4answers]

Bumping for hopeful responses.

 

[Nikki J]

Has he seen a doctor? If so what did his exam show? Of course he needs to get this checked out but at this point it could be many things. A clinical exam and tests will narrow it down

 

[hope4answers]

He has seen our PCP. They ran blood work, said everything looked fine, and referred him to a neurologist for his leg and arm. The neurologist can’t get him in until December, so I’m unsure of what we can do in the meantime.

 

[lgelb]

A physiatrist (physical med/rehab) physician might have less wait time and should be able to assess him to provide you with more information as to strength baseline and muscle tone. They also treat a lot of postviral syndrome patients, which what you describe does resemble, too.

 

[hope4answers]

Thank you for your reply. He went back to our doctor and the doctor was frustrated at the delay in getting in to the neurologist, so she called over saying he needed to be seen sooner. We are supposed to hear from the neurologist this week to hopefully get a quicker appointment.

Can anyone tell me if ALS typically affects two limbs at the same time? Everything I’ve seen implies it’s usually one limb at a time, and not the whole limb at once.

Also, my husband has said that during normal activities he feels fine. The weakness really only becomes prevalent when he does activity such as walking longer distances or lifting heavier items. For example, recently on a family walk he started out fine, but by the end of the walk he found it difficult to walk normally. He could still lift his leg and flex his foot, but his foot just “didn’t seem to want to work right” in his words.

Are those characteristic of ALS or do they make you inclined to think it may be another cause?

 

[lgelb]

L arm/leg onset is not typical, no. Sometimes we see both legs or both arms.

An early stopping point when, say, walking could be a gray area if we are talking about very limited distances. But if he tired out at a couple of miles or something, that sounds less ALS-like. And if he could continue walking with concentration but it was more difficult, that does, too.

Generalized fatigue on top of that also argues against ALS.

 

[hope4answers]

Thank you for your reply!

Yes, it was leg and arm starting weakness at the same time. He’s usually able to walk 1.5-2 miles before he starts dragging his foot, and he can keep walking with more focus, as you said. It also doesn’t affect his ability to lift his leg to his chest or any other movements, just the weak feeling when walking.

He had a neurologist appointment today(they called around to get him in quickly!) and the neurologist mentioned that he has slightly brisk reflexes in his right leg, and he noticed a small amount of weakness in the right leg vs. the left.

He said due to his Dad having ALS that he would like to rule out the possibility via an MRI, blood work, and an EMG. The neurologist did say at this time that he’s not inclined to think it’s ALS, but most likely something else.

Do those all sound like positive signs? I wasn’t able to be at the appointment with him, so just repeating what he relayed to me and what’s on the paperwork.

 

[hope4answers]

I forgot to add his age, which may be helpful to know. He's in his mid 30's.

 

[lgelb]

Yes, that all sounds positive in the sense of potentially a localized injury or other problem. How old was his dad at diagnosis?

 

[Clearwater AL]

It would be very helpful if the Summary/Conclusion of his EMG report
be posted. Also helpful... what ALS facility is he being seen by?

 

[hope4answers]

His Dad was 60 at diagnosis, passed at 62.

He hasn’t had his EMG yet, the neurologist he saw just put in the order this week. He’s not being seen at an ALS facility, but he has been referred to a hospital with an ALS specialist by his neurologist to hopefully rule it out.

 

[hope4answers]

Just posting an update - MRI is scheduled for next week. EMG still needs to be scheduled. He was also referred to an ALS specialist and has an appointment in two weeks.

The neurologist called and is referring him to a hematologist as well because they found low copper and low ceruloplasmin levels. Google suggests a few things can cause this, but I wanted to see if this sub knows if there’s any connection between those things and ALS?

 

[Nikki J]

I think there are conflicting reports. I have seen case studies of low copper but there was a patient initiative about 10 years ago and a group of patients tested free copper they all had elevated levels but none of their controls ( friends and spouses) did

Copper imbalance can cause some neuro issues as well. Both deficiency and excess

 

[lgelb]

As Nikki notes, copper deficiency is a known cause of spastic gait and other motor problems. This scenario is more common than ALS + copper deficiency, so these findings are more reason for hope.

I would expect someone to run urinary copper/zinc next, if not already done, to further narrow down the possibilities.