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cal456

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Jan 10, 2019
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Learn about ALS
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UK
State
NY
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Canterbury
Hello i posted on here a few weeks ago and since then i saw a neurologist regarding my concerning symptoms, would post in my old thread but its closed and i was wondering if i could ask some questions.
Since my last post, the weakness (I will say perceived weakness for the time being as the neurologist didnt see anything substantial) especially in my left arm has got worse, i am struggling to lift as much at the gym as it gets tired quicker and it feels heavy. Im struggling to run the same distance as i used to be able to before also. Cramping in my my thumbs and fingers has got worse especially with use on my phone and the computer and the widespread muscle twitching is still there.

i had a test done for my CK levels i guess to check to see if its neuromuscular related. It came back at 365iu/L (range 38- 190) so pretty much double the max normal. Nothing conclusive yet but does suggest moderate muscle breakdown right? I haven't exercised at all really in months so that cant be brought down to the gym. I read online moderate CK increased levels is correlated with ALS, so i'm quite concerned.
I have a EMG on Monday which i hope will find out whats going on. If anyone can give some insight to CK and the EMG test itself that be good thank you.
 
CPK is really quite non specific. You speak of problems lifting and running so you are apparently doing some activity. Still elevated cpk has many other reasons besides exercise and ALS. Many with ALS actually have normal or low cpk.

The emg will give a lot of information abnormal emgs come in many guises from really nothing just mild glitches to muscle diseases, spine problems , motor neuron diseases and more. Normal rules out ALS and some other diseases. Monday is soon. Let us know when you have results!
 
CPK is really quite non specific. You speak of problems lifting and running so you are apparently doing some activity. Still elevated cpk has many other reasons besides exercise and ALS. Many with ALS actually have normal or low cpk.

The emg will give a lot of information abnormal emgs come in many guises from really nothing just mild glitches to muscle diseases, spine problems , motor neuron diseases and more. Normal rules out ALS and some other diseases. Monday is soon. Let us know when you have results!

Hello yes although very light activity if anything, just a run around the block and light weight curling at home as a means to avoid absolute inactivity. I will let you know thank you.
 
I've hit 6000 on my CPK after a pulmonary embolism, that's worrysome. 365 would be classed as high normal. Wait for the EMG results, that should narrow the list of possible diagnoses.
Vincent
 
Well i had the Nerve studies/EMG done. I am feeling quite a lot better mentally atleast as according to the nice doctor I had doing it it seemed normal.

The only real issue I had was that he didn't really look at more than a few muscles and not the ones on my left where i feel my perceived weakness, and that while he tested one muscle and didn't see anything i had it twitching on the other side! He did notice twitching on occasion however.
He also used a ultrasound to observe parts of my muscles while the EMG was in as well which noticed some movement.

He said he was highly certain it was nothing other than benign twitching and that it and the hand cramps should go on its own. I will trust his opinion, and will have a follow up with my Neurologist next week likely as well.

I will post the EMG results on here when i get them if anyone would like to be very helpful and interpret them for me. Thanks.
 
I hope you will believe this - congrats great news! (twitching means nothing and they know which muscles and how many to test)

You can interpret the results yourself - there will be a summary at the end and it will say - no evidence of MND or something very similar and that's what will matter :)
 
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