help guys

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help guys

Postby iowa1001 on November 10th, 2003, 10:25 am

I should be over this - and I almost was - twicthing started last october - neuro exam in dec at a major research hospital and by a neuro who works on hereditary als clean - begged for emg and he gave in clean last january since then been running 16-18 miles a week - legs still hurt and twitch but no cramping, no foot drop, no falling - then two weeks ago follow-up neuro exam with same neuro again exam clean he said i am fine probably twitching related to me taking synthroid - so i thought great i am in the clean so then had a physical last week and the doc checked like every box and my ck levels came back elevated at 301 so she called my neuro and he ordered another emg - the day before the physical i ran 4.5 miles and lifted weights for an hour - i benched 300 pounds so why am i freaking out - i know they are just being extremely cautious but i thought i was over this and now i have to wait two weeks for the emg!!!!
any support would be greatly appreciated - thanks
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Postby sarahtonin on November 10th, 2003, 10:37 am

I think elevated CK levels are quite common in BFS.

You had a clean neuro examination two weeks ago - that's pretty indicative that there's nothing too bad going on - especially as you've been twitching for over a year. So put together the facts:

2 clean neuro exams (with expert neuro)
1 clean EMG already
no weakness

All sounds very positive to me.

I'm sure they are just being cautious - you're lucky, I can't get mine to do an EMG for love nor money :wink:

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Postby dwl on November 10th, 2003, 11:20 am

CPK levels can easily be raised due to exercise. I had one result which was a bit high but it fell to normal when rechecked a month later. Personally, I wouldn't even say you need another emg - you clearly do not have als.

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Postby Craig on November 10th, 2003, 12:56 pm

The last two CPK tests I've had have been slightly elevated. I know there are a couple of others on this forum who have had the same. I wouldn't worry about it.

Take care,

Craig
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Postby fastpage on November 10th, 2003, 2:42 pm

Same here. I had elevated CPK last spring. It was normal when retested in July while the twitching was unchanged. The neurologist was not concerned with the CPK levels when all the other tests were normal. I think you are fine.
No man has a right to live who has not in his soul the power to die nobly for a great cause. --Theodore Roosevelt.
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Postby iowa1001 on November 10th, 2003, 3:09 pm

thanks everyone - i just thought i had this under control i was soooooo happy with the one year clean neuro exam and was starting to live with the twitching and then this - so of course what am i doing today eventhough i know better walking on toes and heels
again thanks
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Postby garym on November 10th, 2003, 5:08 pm

Just to restate what has already been said, exercise breaks down muscles causing CPK levels to go up. I too would not worry.

By the way, good job benching 300 lbs., and running so much. Two more reasons not to worry! I would probably be more concerned about hernias :lol:

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update

Postby iowa1001 on December 11th, 2003, 3:47 pm

Well had the emg (this time it hurt -sorry don't want to scare anyone but the neurologist had run out of small needles and the other three rooms were in use so he asked if he could use a bigger guage needle and i said yes-stupid) - It was three inches at least not some tiny needle like they use for flu shots) He stuck the calf (pushed the needle the whole way in)made me push against him as he watch the motor unit and then stop did that three times and then also the hamstring) - his conclusion one of two things and they are probably related either it is the synthroid i take (article on synthroid and muscle aches and pains) or BFS or both but nothing else. He saw nothing on the screen and he left the needle in for 2 minutes as i rested the muscle. So do I still twitch yes - do i hate it yes - but i am getting better at ignoring it-
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Postby jcavan4125 on December 11th, 2003, 4:47 pm

That's great news, now quit worrying about it and work on that 350lb. bench.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Jenn311 on December 11th, 2003, 5:40 pm

Hey that's how much I can bench press!

Yeah, right....

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CPK levels

Postby Dale on December 12th, 2003, 9:58 am

I've had a lot of experience with CPK levels and a reading in the 300's with your level of activity is nothing to be concerned about. The CPK test is a very non-specific indicator. They only get concerned when readings are in the thousands.

Back last November (when I just started my twitching), my CPK was 307 with the upper limit of "normal" at 210.

I lift weights regularly, play competitive sports and like many of us, I started to work-out harder to convince myself that I wasn't loosing strength. I had my blood work done a few months later and my CPK had risen to 785. My GP asked about my work-outs & suggested another blood sample be drawn. He also instructed me to lay-off the weights & bike for a few days before the test. Got the results back & my level dropped to 161.

So, if you are having a CPK test done, my suggestion is to avoid strenuous exercise for a few days before the test. FYI, I also learned through research that aspirin & alcohol can elevate CPK readings.

Hope this helps & keep-up the "curls for the girls"...

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Postby thetwitchkid on December 12th, 2003, 11:04 am

Dale:

Thanks for the info. It helps keep it all in perspective.
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