ALS?

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Cait31

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Hi,

I am a 28 year old female. I am experiencing a weird feeling while walking on my right side. When a physical therapist did a test on me she said I was 4.5 strength on right hamstring side and 5 on left hamstring.
I went to the neurologist and he quickly examined me and said I was fine and did not seem weak. He said I was too young for ALS and basically said he thinks it is a pinched nerve in my back…even though I don’t have much back pain.
I am also now experiencing some twitching all over my right side (shins, hamstrings, glutes).
I have not fallen or tripped or anything as serious as that but does this sound like early onset ALS?

thank you in advance
 

lgelb

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No, it does not. A pinched nerve or soft tissue strain is most likely. A pinched nerve does not necessarily mean back pain. I would stay active, stretch, etc. and ask about PT if any of your usual activities become troublesome.

Best,
Laurie
 

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Read this through really slowly and carefully as it will help you sort out what you are feeling compared to what ALS is.
I hope things resolve quickly for you.
 

Cait31

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Thank you both very much. I am praying for a cure for ALS and donated towards the cause. This disease needs to be ended soon.

One last question… does weakness typically occur slowly or do you all of the sudden just not have the ability to do things you used to be able to? For example I notice the weakness in my thigh when I walk… If it were ALS would I even notice the weakness like I am or would I just not be able to use this muscle anymore? I am confused by the term “clinical weakness” in the “read this before posting” section.

again thank you from the bottom of my heart. I have read many of your replies and it is so inspiring to be able to help people through these times. I know myself I have shed countless amount of tears and have had major anxiety over this situation. It makes me take a step back and remember how good and selfless people can be. Praying for everyone who reads/posts/replies.
 

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Clinical weakness is weakness detected by a doctor on clinical exam. What correlates with that in a patient is the inability to do something. It is not a feeling but a failure. Initially it may be very small indeed but will fail in more ways as ALS affects more muscles A common onset is inability to walk on tip toe or heel. Of course there are other causes of clinical weakness anyway but you fortunately had a normal neurological exam which ruled out clinical weakness
 

Cait31

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Hi everyone,

I just had an EMG/NCS. It looks like there are abnormalities on the NCS, but I am not sure if they relate to ALS. I have my follow up appointment with my neurologist in a few weeks but I was hoping I could get some insight. I am attaching my results.
Thanks in advance
 

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Nikki J

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The ncs is not related to ALS and abnormalities there point to something else. Your emg was normal which in conjunction with my normal clinical exam means no ALS/ MND Ask your doctor to explain your ncs as it relates to your symptoms
 

Cait31

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Thank you for your quick response. So at this point it’s fair to say that I can rule out ALS/MND completely? These results definitely mean something else is going on?
 

Nikki J

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Your emg and exam rule out ALS as I said. Whether the ncs is significant is up to your doctors to say But whatever it is you have ruled out ALS
 

Cait31

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I am so sorry to be a bother. I am just spiraling and keep over thinking everything. I have 2 questions.

1) is it normal for fasciculations to only be in one area in ALS? Mine have settled in my calf and have remained there almost consistently all day. They are small and can sometimes be felt but sometimes not. But if I look I can see them. I Have read that this is indicative of ALS. Does anyone have experience with this?
2) can an EMG be done too early if the main symptom is just fasciculations (no weakness/atrophy)? Mine came back clean, but does this definitely rule out ALS or is there a chance it did not show the patterns of ALS yet?

Thank you
 

Nikki J

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It is very common for people with benign fasciculations to have hot spots of concentrated twitching. Calves are a common area. The feeling/ not feeling happens in all kinds of twitching not just ALS

if the twitching was related to ALS it would be because of dying motor neurons. Your emg was normal ( did not detect dying motor neurons) therefore your twitches have another cause. Please work with your doctor
 

Cait31

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Thank you so much for your reply. I am just so scared that this could be early onset ALS despite the normal EMG. Typically weakness would be felt/noticed prior to twitching (even if the twitching is localized) right?

I think I might just be overthinking things and I’m sure I’m becoming a pest to you so I apologize.. I am just in constant fear and anxious from these twitches and have unfortunately read way too much google… ugh.
 

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Perhaps you should talk to someone about your fears. You are asking question after question to terminally ill folks and their caregivers when you show absolutely no sign of ALS. I'm sure you're worried but it's for naught. Instead of seeking reassurance from dying people, perhaps discussing your fears, and why you have them, with a professional would get you much farther in starting to feel better.

You no longer need to be here. Good luck to you and take good care
 
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affected

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I sent you a link when you first started this thread and it totally answers you.
Please, back to your doctor, it is not appropriate to keep asking these questions of terminally ill people.
Only a doctor can help you.
 

lgelb

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Yes, you would manifest (not "feel") weakness if nerves were dying. The EMG shows that they're alive and well.

As stated and linked, twitches and weird feelings are not close to ALS.

I'm closing this thread. Please do not start another.

Best,
Laurie
 
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