Clearing Something Up Regarding Weakness

[Daphblake]

Hey all,

I've been reluctant to post in this Forum as I'm aware of the rules. I even went digging to find a similar experience with no luck. I think the community may be able to help me here as I avoid Googling like the plague!

In December 2023 I woke up one day with a weaker calf. Not totally clinically weak which was good. But it felt like when I reach failure at the gym, the muscle works but there is actually no juice inside it to give it power. My left calf was giving 30+ calf raises and my right can give 3 - 5 maximum. It was super strange.

After a couple of weeks I noticed the fasciculations in my legs begin. They were prominent in my calves, thighs and eventually went to my hands. It was then I began waking with cramping in my calves and hands. My right hand would randomly claw inwards. The finger spasms got to the point where they were twitching so bad that it look like I was purposely wiggling them.

I just ignored all of these until mid March when a colleague asked me if I hurt my ankle because I came to work walking with a slight limp. ( I never even noticed it until she said it )

I booked in with my lovely neurologist and he noticed the slight limp and weaker right calf. He has put me on a watch and wait 3 month window as I hadn't had any clinical weakness but he noticed that the parts of my hand ( the meaty part between my index and thumb were firing off fasciculations like crazy ) He told me its too early and vague to rule anything in or out so I must come back in July.

In the mean time while I wait, my right calf is technically and clinically working but it is so weak that it is impacting my day to day activities. And those twitches are doing my head in! Simple things like walking is such a chore!

So my questions that I forgot to ask my neuro are:

Is it an absolute golden rule that clinical weakness happens suddenly with ALS? Can a muscle gradually decline? Or is it always a sudden death of the muscle? Is the illusion of gradual muscular decline in ALS actually one of the muscles of that specific limb failing completely. Giving the overall limb a weaker feeling?

&

Is it rare or just uncommon for ALS to develop in different limbs simoultaneously? For example, the shoulder and the calf.

Thank you all, (If you can't help I will save my questions for my July appointment but I thought I would chance my arm here first).

I hope you and your loved ones are doing ok.

 

[Nikki J]

Well when I lost calf raise it was sudden and I could tell you the date and even hour. That wasn’t my first symptom though. Mine was ankle weakness which was consistent as well

Two simultaneous sites of onset isn’t the way ALS starts either as it starts in one place and spreads sometimes it spreads fast but that is usually the case with very aggressive disease that would be unmistakable at this point

If your neurologist found weakness on clinical exam that is by definition clinical weakness. And I am unclear about your hand. It isn’t weak anyway ( just twitchy and cramping) is that right? So you really have only calf weakness

As your doctor says it is early and vague. There are many many causes for your symptoms. ALS is ultra rare at your age so odds are in your favor. Best to go out and live your life I am glad you don’t google much. Good luck

 

[Daphblake]

Hi Nikki!

Thanks for your reply! He noted that my right calf had less strenght but wasn't clinically weak. He said "It's perceived but notable" and said my left was 3x stronger.

As per the hand, the hand is cramping, fasiculating and clawing. It's all so strange for me. I am struggling with day to day stuff. But if ALS isn't common in multi-areas then I suppose the hand can be put down to coincidence.

That's interesting about the calf. Even though there are two muscles in the calf, both of yours failed in an instant. Very crazy. Maybe I shouldn't be worrying unless the calf doesn't lift.

Big love to you Nikki, you are great.