Advice after 5 years of being ok

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Noey

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Hello everyone. I never thought I'd be back here, but here I am again. Some might be familiar with me as I was here 5 and a half years ago when I was 23. I came here because I had body wide twitching. To cut the long story short, an initial EMG showed that I had ALS (Denerv, fasci etc). I did a second opinion and another EMG focusing on my left side muscles and an MRI of the spine as well as clinicals, and lo and behold, all were clear except for the absence of bilateral f waves in peroneal nerve to which my neuro indicated could be just something normal. I decided to move on with my life even if the twitching was still there. Some days it was bad, some days I didn't even think I had them. In that 5 years, i could say i didn't feel them. I hiked, trekked, travelled to other countries, commuted to work every single day, attended concerts, etc. with absolutely no problem. Last year, I decided to start doing home workouts due to the quarantine. It was then that I noticed that my right knee popped a lot although without pain. Around 3 months ago, I focused on working out my legs and buttocks. Like what I said, these are home workouts without a trainer looking after me so I can't guarantee my form was right. Please keep in mind that there was still twitching from time to time. I also got a dog and her cage is pretty big. I have to get my right knee into the cage to clean in and it carried all of my weight. fast forward to roughly a month ago, i noticed that my thighs were uneven. My right thigh was thinner than left despite me being right dominant. My right foot is arched more than my left. I also had on and off right knee pain. Around 2 weeks ago, the knee pain was constant and affected my thigh and calf muscles too. I also noticed that I was starting to twitch a lot on my right leg. Now this is where my worry comes to play. Would it be possible that my knee is in pain because my thighs have no more muscle? Could I be manifesting symptoms now? It's been 5 years of doing literally normal stuff and suddenly my leg muscles are uneven, the twitching there is more frequent and there's muscle pain.

If you've made it to the end of this post, thank you for your time. Any inputs are much much appreciated.
 

ShiftKicker

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Hi Noey- I have posted your past threads here, as there is a more complex history that people might need to read first before commenting. I will ask if you have seen a doctor recently about your concerns. If so, have they observed a change in muscle proportions over time?



 

Noey

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Hey, nope I haven't. I was prescribed pain meds for my knee. If inwere to base it on my observations, I'd say that the change in muscle proportion happened fairly recently. My right thigh is thinner by 2cm than left.
 

lgelb

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Your knee would not be in pain bc of lack of muscle. The nerves that cause pain are completely different than the nerves that allow movement. There would be loss of function with the loss of muscle. You provided a possible explanation when talking about the knee extension/pressure in cage cleaning. Remember, your knee is not really padded. And a static position with unilateral knee extension is awkward, very easily causing a soft tissue injury. Try a pillow or cushion under it when you clean the cage, and see an orthopedist ASAP, would be my approach.

Stay out of the ALS rabbit hole -- it's no place for a fundamentally healthy person.

Best,
Laurie
 

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Hi Laurie, appreciate your thoughts, really. Should I be worried about the asymmetry? Not sure if there's atrophy there and honestly all I can say is that there's pain on my knee joints, thighs and calf and they aren't identical to my left. A feeling spasms as well. I don't know if I'm weak but everything I can do with my left, I can do with my right. Albeit wobbly, but I can. There's a feeling of heat too on my ankles if that makes any sense. Just curious, have you encountered people who were TOTALLY fine for years and just suddenly spiraled down? My understanding is, ALS is progressive. In that 5 years, there must've been something that progressed if I actually had it right?
 

lgelb

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Yup. Have encountered no delayed onset as you describe and no regular onset that resembles it, either.
 

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Truly, you still don't display symptoms of ALS.
Please see your doctor for help working this through.
 

Noey

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Sorry, Laurie. You mean you've encountered people who have delayed onset after roughly 5 years? Thank you all, really. I think what's bothering me is that the twitching never really went away. I just learned to live with it. Now my right leg has become a hotspot for it. My calf, bottom of my foot, my thighs (I still twitch in other parts of my body but not as often as the right leg). I'm just fearing that this is some delayed manifestation of symptoms. :(
 

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No she means she hasn't encountered this, none of us have. Twitching means absolutely nothing, it's not a 'delayed manifestation'.
Please see your doctor
 

lgelb

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Correct -- "yup" was answering your question about whether you would have progressed if you had ALS 5y in.

You don't. But I would see an orthopod re your knee.
 

Noey

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Thank you both. I have just one last question. When does joint pain come in then in ALS? And basically, pain in general? I read this in the stickies:
"There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together" and this is where i'm worried. That my thigh muscle is actually wasting and my knee is taking the blow.
 

Nikki J

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Knee pain is common. ALS is not As Laurie said see an orthopod for examination. My sister did not have pain until she was paralyzed and her muscles unable to support her. I think you likely are over sensitized by your misdiagnosis previously which is understandable but the sensible thing is to get your knee checked and stop worrying in the meantime.
 

Noey

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Hey all, just wanted to understand atrophy better. As i previously mentioned, my left thigh is bigger than my right. My right being thinner by 2cm even if i am right dominant. My question is, doesn't atrophy come after weakness? Meaning thinner muscles happen if one does not use that muscle at all for quite some time or is it something simultanuous too? Is it possible to have atrophy and then the weakness follows? I'm trying to google but can't seem to find answers. My thigh muscles feel stretched sometimes and sometimes there's pain in my calf too.
 

Bestfriends14

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I'm not sure why you're googling for such a minute difference, as everyone is asymmetrical. In ALS (which you don't have), atrophy follows failure. It seems no answers are soothing your fears as you are adding new questions with each post.

Please remember your audience-those who actually have ALS and their very tired caregivers. You are expecting this audience to handhold your fears and serve as some sort of source of information for you. Not fair and totally inappropriate seeing as you haven't even bothered going to the doctor for them to field these questions first.

Please, as told to you now several times, go see your doctor.
 

affected

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See your doctor and ask - please examine me and explain any atrophy you find or why it is not atrophy.
Surely that is the appropriate way to understand this?
Bodies are not symmetrical.
Atrophy follows weakness but you know this, you have read the stickies and you have posted here 44 times. That truly is more than anyone can reasonably expect us to answer over a period of 5 years.

See your doctor. Period.
 
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