Hoping for reassurance

[Ach99]

Hello all- first off I want to thank everyone who takes the time to respond to these threads when you are going through so much. I have the utmost respect for you all and your bravery as you deal with the damages of this disease.
I am hoping to get some questions answered. I have convinced myself it is unlikely I have *** but I continue to have a nagging fear in the back of my mind about it. I have ready many threads and the sticky multiple times but am still hoping for some reassurance.

About 6 weeks ago I woke up one morning with my left quad twitching. It was quite vigorous, quick, and went on for several minutes. I didn’t think much of it, and went on about my day. For the next several weeks I had intermittent twitching in this area. Then 4 weeks ago I went on a week long work trip. It was long hours and poor nutrition. One night I was laying in bed and started to have twitching rapid fire all over. Back, thighs, calves, feet, shoulders, glutes.. everywhere.
The next day it continued, and on the third day I woke up and my leg felt very strange, kind of numb and tingly, kind of like a pre cramp, and weak. I wasn’t sure if I would be able to work that day, but it wasn’t actually weak, so I did. The next 2 days that feeling continued, and the twitches continued as well. When I came home from my work trip the tingly feeling gradually resolved, and the twitches more localized to that leg, though still intermittent twitches other places too. This went on for a week or so.

In the meantime I got in with my PCP. My labs showed low vitamin D of 17, borderline low calcium, and otherwise normal thyroid, blood count.
I started on supplements including vitamin d, calcium and magnesium and my PCP referred me (per my request) to neuro for an evaluation and emg. Evaluation is April 9 and EMG is end of May.

I started to feel a bit better, but then the numb tingly feeling moved to my left arm. It has felt crampy and sore sometimes, sometimes I have had a stab of burning stabbing pain in the bicep or tricep that has set off twitches etc. It is like it is about to cramp and then will start to twitch. During this time my neck has been bothering me a bit too so I’ve wondered if I have a pinched nerve.

Over the past 2 weeks, most of my twitches have greatly improved. I still have a few in my glutes, calves or thighs a few times per day. However I Am still having them in my left arm (bicep, tricep, forearm or hand) multiple times per hour (though this frequency is an improvement from 2 weeks ago for sure). They are generally just one twitch at a time. My arm still feels intermittently numb, tires easily, sometimes feels stiff or clumsy (though am able to do everything I need to), occasionally burns or feels crampy. Even though it sometimes feels weak I haven’t been able to find any weakness. I would say it’s gradually improving overall but my arm just continues to feel weird and twitch.

Like I said, I’ve largely convinced myself I don’t have *** but my concerns/questions are-
Does the tiring easily or feeling crampy in an extremity with more twitching, but no weakness sound concerning?
Does *** twitching generally get less frequent/intense without any weakness being present?
Is twitching all over the arm with some in glutes or calves less concerning than twitching localized to say the tricep or the bicep?
Does feeling weak or clumsy with no clinical weakness generally precede failure? Or is it really like a light switch with no warning sign?


Any other thoughts or feedback would be much appreciated.
Thank you so much

 

[ShiftKicker]

It's perfectly fine to write out "ALS". That is what we deal with here.

Please make sure to read this: Read Before Posting.

Twitching absent weakness (real clinical weakness, not feeling weak) can mean many things, or nothing at all. That is where you'd have to work with your doctors to figure out what might be causing your issues.

So, to answer your questions:

1) No.
2) This does not signify for you and is not something that can be clarified, as twitching, absent clinical weakness can mean all sorts of different issues.
3) Again, twitching absent weakness can mean a variety of things.
4) Sensory issues (feeling weak, feeling clumsy) point elsewhere, as the link provided says.

Take care, and please keep working with your doctor.

 

[Ach99]

I appreciate the response. I have read about ALS patients experiencing cramping or soreness however, which is definitely something that can be felt. Sometimes I can’t tell if my arm is a burning nerve pain or a burning like the muscle is fatigued and about to cramp. Can you speak to this? What kind of cramping do ALS patients generally feel? Is this like a Charlie horse cramp? And is this often after weakness presents?

What about atrophy? Is atrophy a result of weakness and muscular disuse or does it start before weakening as the nerves supplying the muscle die?

My other question is that I’ve read that often ALs twitching will start close to the body and move down. Is this usually like twitching in the bicep for a period of weeks/ months then moving to forearm and then hand? Or is it more quick than that? I experienced the pain and cramping with twitching in my bicep and tricep first last week, and then now I am having twitching all over the arm and hand. It will go tricep, forearm, tricep, thenar, hyphothenar, forearm, etc. Is this twitching generally more localized too? Like just in tricep, then just in forearm, then just in hand? Or more starting in bicep and progressing to whole arm?

I just feel concerned now because the twitching and muscle fatigue seems to have localized itself to my left arm. It was actually more reassuring when it was my whole body.

I appreciate you all taking the time to answer!

 

[lgelb]

If you can't tell whether the pain is fatigue or neuropathic, that doesn't sound like ALS (where there is not typically pain at onset anyway) at all.

Atrophy generally follows clinical weakness -- an inability to do things.

There is no point to speculating about how/when/where twitching moves since twitching in itself is not an ALS sign. All I can say is, stop reading about ALS.

Low D/calcium can lead to twitching. Suggest diet/supplements be discussed w/ your GP.

Often an injury starts to hurt, wanders around with referred pain/twitching, and comes back to where it started. None of that has anything to do with ALS. If the local pain persists, of course, your GP can refer you to an orthopedist or image it or do more bloods, but the fact that you were referred to a neurologist at your request is not suspicious at all.

 

[Ach99]

Thank you!!