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worriedindenver

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So I've tried to stay away from posting on this board, but just received a call from my doctor and it has me absolutely terrified.

My timeline...

About two weeks ago I started to feel weakness in my left hand. It wasn't the type of clinical weakness you read about here, but in doing some back exercises at the gym it seemed like I wasn't able to grip the bar as securely as I previously had.

About a weak after that, I started to feel some weakness in my legs and then arms, but it seemed to be more perceived than clinical. I could still do everything I had previously, but it just seemed to take more effort. I took some magnesium supplements and this feeling significantly decreased and pretty much went away.

Next followed the muscle twitches and that's when things started to get really scary for me. Both calves and feet seem to be firing constantly. There is the odd arm, hand, forearm twitch added to the mix as well. This has been going on for about 10 days.

I finally went to the doctor (primary care) who did a very basic neurological exam. Everything checked out as within the normal range. Next he drew some blood and I just got the results back indicating that everything was normal except for elevated CPK levels (390 - whereas no more than 190 is considered normal).

This has me ABSOLUTELY frightened. In my mind, because I have not exhibited any clinical weakness, this elevated CPK is indication of the muscles starting to die off and that the weakness isn't far behind. If I weren't twitching all over, I could probably write off the elevated CPK levels as a result of my heavy workout schedule. But, with the twitches added in, I'm having a hard time seeing that this is going to end up being anything other than ALS....

It sounds like a muscle biopsy and EMG are on deck next...

Any insight this community can provide would be greatly appreciated!
 

Nikki J

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Heavy workouts will lead to elevated cpks No need to worry. Even without workouts it is a highly non specific test and jumping to such a conclusion as ALS is unwarranted

First step if anything would be no exercise for a werk or two repeat the test
 

ShiftKicker

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A simple search online for elevated ck levels and exercise will provide ample explanation. People can put themselves in hospital if they don't exercise properly- and it has absolutely nothing to do with neurological issues. Livestrong has several good and understandable articles about cpk levels and working out. Please research further there if you want to know the details of how it works, and rest assured you and your doctor will find the real reason for the levels you have.
 

KimT

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Agree with above. Also, FWIW, my CPK level have been in the 40s for the past four years. Prior to that I never had them checked even though I was very athletic, played competitive sports, and did weight training. Had I checked them during that time I expect they would have been higher than they are now.
 

Vincent

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Twitching means nothing. The heavy workouts raising your Cpk levels might also be causing dehydration which in turn can cause muscle twitching. The classic ALS symptom is clinical weakness, which you don't have. So relax, you are going to be here for a long time. Another thing to keep in mind is twitching is a lot like getting the dreaded letter home from school. Someone in your child's class has HEAD LICE. The first thing you do is start scratching your head. You check everybody in the house. Nobody has HEAD LICE. No body on the block has HEAD LICE. And still you are scratching your head. You're probably scratching just reading about HEAD LICE. Twitching works the same way, you see a twitch, you see them everywhere.
Vincent
 
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worriedindenver

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I truly appreciate each of you taking the time to respond.

If I am going to be absolutely honest, I cried when I read the replies as they provided me a few minutes of solace from the very difficult thoughts that have been going through my head this afternoon (and for the last week or so). Even typing this now makes me very emotional.

I must say, what still worries me is the fact that the high CK/CPK levels are coming along with non-stop fasciculations in my legs - mostly calves, but also feet and quads - but that in the past day have become more regular in my forearms and hands.

If it was just one or the other, I think I could handle it mentally and maintain a positive outlook. But, when they are taken together it absolutely frightens me.

I am convinced that the high CK/CPK level is a result not of my physical activity, but an early precursor to muscle atrophy and weakness.

I did work out the evening before my appointment (around 5pm with a roughly Noon blood draw the next day), but it wasn't overly strenuous with a few arm exercises and a two mile run. Some of what I have read indicates that mild exercise isn't generally enough to increase enzyme levels - and if it did, it would be immediately following the exercise but not likely 18 hours later. At the same time, there have also been plenty of people with counts in the many thousands, so is 380 almost expected the day after a moderate workout?

I'm still struggling, but I am truly thankful for all of your help.
 

Bestfriends14

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I so wish something as totally simple as elevated CPK levels and onset of ALS was correlated, however, it's not. If it were that simple, ALS would have been cured long ago.

My husband has normal CPK levels and has ALS. Every single thing you've described sounds nothing at all like onset of ALS. What clinical weakness do you have? What have you failed at doing? Twitching is meaningless , so wouldn't be a cause of worry. Elevated CPK levels is meaningless in the context of ALS symptoms, so wouldn't be a cause of worry.

I'm not seeing what it is that's convinced you of having a precursor to muscle weakness.

Please ease your mind. Believe the folks on the forum and the medical team that has assessed you. What you're experiencing is not a precursor to muscle failure.
 

KarenNWendyn

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Elevated CPK can come from heavy exertion, meds (particularly statin drugs), intramuscular injections, hypothroidism, inflammatory muscle diseases, or just be normal variants. For example, the normal range in African Anericans is higher than in Caucasians.

Some prople run elevated CPKs all the time, and that’s perfectly normal for them.

I have ALS and my CPK is normal. Go figure.
 

worriedindenver

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What continues to make me nervous is that there are medical studies out there that state things like:

'Male gender and extremity onset were significantly associated with high CK.' And in other reports, it is only 'mild' elevations in CK that seem to present with ALS. With mine being 390, that seems right in that expected range.

I know that I don't have clinical weakness, but some of the general weakness I have felt has me worried that more is on the way.

My biggest concern is that the high CK levels - along with the fasciculations - are indicative of muscle wasting and that the atrophy and clinical weakness aren't far behind...

I know I went the gym the day prior to the blood draw, but in the scope of the activities I completed it was a pretty moderate workout. Had I done something bigger/longer, I would feel more comfortable attributing the elevated level to the previous day's exercise.

I know the only answer here is to go in for a EMG and muscle biopsy, but I'm having such a hard time looking away from the scariest (and now in my mind most likely) possible outcome.
 

KarenNWendyn

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You’ve worked yourself into believing a very unlikely scenario and your anxiety has the better of you.

Can we reassure you? If not, then maybe getting an EMG would give you peace of mind.

Please don’t let anxiety ruin your health. Work with your doctors.
 

ShiftKicker

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Worried- I think this discussion has run its course. While we can't stop you from sitting here, I would like to ask you to stop engaging in conversation here now, as it does you no good. It is not reducing your anxiety and has now taken more than enough time from members here with you being unable to believe the many experts who have given you verifiable facts about CPK levels and exercise.

Please post AFTER your doctor's appointment. I will leave this thread open for only that reason. If you choose to continue posting the same old repeated worries, this thread will be closed.
 
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