Still nervous about ALS.

Johncool

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This was my post from December





Still feel mostly same but had a shoulder twitch left side nonstop for nearly 3 days. Non stop as in every few seconds a twitch.

That went away and now muscle between thumb and pointer finger twitching non stop similar to shoulder.

Very annoying, hard to sleep with the twitch and causing extreme anxiety.

Call neuro for appointment and earliest is April 19th so I guess I have a month of panic ahead of me.. to reiterate, I had a "clean emg" in October when tested for carpal tunnel but the fascilacitions are much more frequent now 5 months later.

Since initial doc appointment and initial symptoms, we are at 7 months. Still can walk no problem and do normal day to day but just feel weak.


Any insight would be greatly appreciated.

Thank you.
 
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affected

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Feeling weak is a great indication this is not ALS as PALS don't feel weak at all.
Twitching means nothing so you might go back to your doctor and ask for help with the anxiety you are suffering as there is truly nothing to panic over.
You can also concentrate on your overall health - hydration, sleep, nutrition, exercise, meditation, yoga, volunteering or doing something productive. Honestly that makes a huge difference for relieving being hyper-vigilant.
Let us know after you see the neuro as that really isn't very far away now, only weeks.
 

Johncool

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Thank you. For your insight. I guess the whole clinical weakness vs. Weakness is where I get confused.
 

Nikki J

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Clinical weakness is muscle failure detected by the doctor. We often have a good indication we will be told it is clinical weakness because we can’t do something. An example would be complete inability to walk on tiptoe. I could with no issue then I couldn’t. I felt and feel fine. It is a very weird thing to confidently tell your body to do x and it doesn’t.
 

Johncool

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Went to neurologist on Monday. They did blood work, low on vitamin D. Also set me up for a neck mri and a nerve study/emg on legs. Doc still not thinking als so that's a good thing. I did bring up my emg from October and he again said it was normal. Arms and legs still "feel" weak. Arms also feel tight when I like flex my bicep. I guess these other test will get us a little clearer.
 

affected

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This is great news - with ALS your arms and legs will not 'feel' weak and the don't 'feel' tight, they simply will fail to work and you will be very surprised as they will feel like they should work.
Let us know the diagnosis when all the tests are complete.
 

Johncool

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Thanks for the reply. I will keep posted. I hope whatever I am feeling is just related to Covid and not anything serious. I really appreciate all the insight from this forum.
 
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