Better some days, worse other days?

[Sppspp10]

ALS symptoms do not improve over time nor “come and go”. But does anyone else feel better some days where symptoms are less severe? For example some days I can’t do pincer grasp to pull a zipper. Another day i can just manage it. Some days I can only get up from a squat position if I push off with my hands. Other days I can just get up without arms getting involved. Thoughts? I am constantly playing around with supplements so I am curious if they play a role with this. (Supplements in rotation: vitamin D, L carnitine, b12, iron, probiotics)

 

[Nikki J]

I have good days and bad days. I used to be able to predict the bad ones as they followed a day of over exertion. I still get those but some just random. And mornings are my best time. But there are definitely more things than not that once lost have remained so

When were you diagnosed? Did it take a long time ? I suspect this experience is more common in slow progression

You might ask your neurologist to follow your nfl and make changes to your supplements slowly so you can see what it does. B12 = methylcobalamin?

 

[Sppspp10]

Thanks for your reply, Nikki.
1. I am not diagnosed. Neurologist friend referred me to a colleague after hearing my symptoms…colleague specializes in ALS which scared me. Will see them in a few days. My Diagnosis journey started in February, started with subclinical hypothyroid results, symptoms included trouble raising arms (and feeling very short of breath when raising them), weak grip in right hand, twitches kind of all over, mostly arms. By May this grip issue progressed to affect function…could still do most things but was a lot weaker. Between May and now, I also developed overall body weakness with function difficulties especially noticeable in thighs (like getting stuck in squat position), core (can’t get up from a supine position without all kinds of ninja kicks).
Most recent is the atrophy of interossei in right hand, potentially also atrophy of right tricep but could also be because I stopped all exercises back in Feb due to weakness. Twitches continue throughout.

My post was because I was reading the “Read before you post” and was wondering if symptoms varying in severity could still be ALS. Usually worst at night but some days I feel a bit stronger than others. A lot of plateauing. But some functions (especially arm raising) trends progressively worse.

2. Yes b12 = methylcobalamin

 

[Nikki J]

It sounds a bit diffuse without outright failure compared to my experience. Initially I had progressive and absolute failures of function but everything else worked fine. It was only later that I started with the good day/ bad day I think because I had lost so much that functioning at all took a lot of effort

But the specialist will sort it out for you. Let us know what they say

 

[winterj]

Yes, I have better and worse days. But it’s relatively minor compared with overall decline in function.

 

[Nikki J]

That is a good way of explaining it

 

[Sppspp10]

Saw a neurologist who suspects ALS but found two oddities that "gave him pause": no hyperreflexia (if anything it was rather hypo), and generally asymmetric presentation of symptoms. But the other options like CIDP and Myasthenia Gravis don't seem to fit the bill as well as ALS. I am going in for an EMG today and feel like I"m walking in to hear a death sentence. Terrified.

 

[Clearwater AL]

Being you are having your EMG today.... post the Summary/Conclusion at the
bottom of the report when you get it. They must forward that report to you.

Every ALS'er is different... everyday is the same for me as far symptoms go...
no improvement. My attitude may be better some days. But nothing gets
better one day or the next as for progressive symptoms.