Buttock atrophy and twitching

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Sibbo84

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Learn about ALS
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Hi all,

I briefly posted in December of last year but it has been closed. I have some new symptoms I would like to run past you.


I’ve had intermittent twitching since February of 2020 which increased in January of this year. Initial focused on my left arm then moved to my right leg (still with the occasional singular twitch here and there). A few weeks ago I got what I can only explain as a ‘rumbling twitch’, if that makes sense, on my right buttock. This happened on 3 occasions over a course of 2 days and lasted around 5 seconds. I looked to see if they were visible and noticed my right buttock is a different shape/smaller than my left. It’s like a portion of the muscle is missing on the bottom towards the outside. Completely understand this could have been there all along and I’ve not noticed but as this is the exact spot where these rumbling twitches occurred, it has me slightly concerned. I now have a strange sensation in that area, like a pressure or pulling of the muscle. Still some minor twitches and I’ve also started getting ‘pre cramps’ in my right arm and leg but so far, never a full cramp. My fingers also feel stiff.

So far no weakness, although given that the muscle issue is on my buttocks, I’m not sure where I would feel weakness/be weak if there were any?


I went to my doctors and she didn’t think it was atrophy but acknowledged a difference. She referred me to a neurologist due to the twitching (which as mostly gone).

I know twitching is meaningless and I will be directing all these questions to the neurologist but seen as there are other factors, keen for your thoughts please?
 
I have never heard of ALS onset in the glutes, nor have I heard of it anywhere else, as you describe it.

I would keep working with your doctors, while recognizing that the hallmark of ALS and other serious neuromuscular diseases is not episodic sensations but ongoing deficits.

As you acknowledge, there is no reason to suspect clinical atrophy or weakness at this point.

Best,
Laurie
 
Past posts:

I'm sure you know that twitching without clinical weakness (which you don't have) means nothing. I can see you are really concerned but you just aren't displaying anything that raises alarms for us.

Work with your doctors, let us know when you have a diagnosis. That is truly all we can say. Many of our PALS are either completely paralysed or gone by this point. We just don't see ALS in your vague reports, please be encouraged.
 
Thanks Laurie,

I was just questioning as I’m not sure where I would feel weakness if the ‘atrophy’ is in the glutes, but I have no weakness on the right side and assume I would maybe feel something. Either way I will address these with my neurologist, whenever that may be.

I know it’s about failing not feeling but like many people, worry when everything is down one side and all remaining twitches are on the right. But I’m being rational (whilst a tad unnerved). The feeling aspect was more me thinking that the muscle in the glutes may be reacting to the muscle issues.

Thanks for your response.
 
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