URGENT-Creatine Kinase

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Jules45

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Many of you know that I've posted here before.

I am now PETRIFIED. My Neurologist who has done the EMG of legs and neck and exams which were all negative. Now he just found out about that I have a slightly elevated Creatine Kinase levels and slightly elevated Bilurubin and Albumin and his nurse said that he may recommend an ALS work up!

Has anybody heard of this?

I'm so scared right now I can't breath!

Please help.
 

lbeyerl

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Interesting. MY CK level has gone from 40 to 74, increasing each time that i have had it tested (5 times in last 6 months). My bilirubin levels were also every so slightly elevated.

I had an EMG in all limbs. The first two were clean. The last one indicated a myopathic pattern. I have brisk reflexes and a hoffman sign. My neurologists(s) at Duke tell me I DO NOT HAVE ALS.

What is an ALS workup anyways? There is not one conclusive test for this so I'm not even sure what that means.
 

GGKK

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Many of you know that I've posted here before.

I am now PETRIFIED. My Neurologist who has done the EMG of legs and neck and exams which were all negative. Now he just found out about that I have a slightly elevated Creatine Kinase levels and slightly elevated Bilurubin and Albumin and his nurse said that he may recommend an ALS work up!

Has anybody heard of this?

I'm so scared right now I can't breath!

Please help.

Jules,

What are your symptoms? So strange the recommendation of this nurse...no sense!

All the best for you,

GGKK
 

olly

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my ck levels were raised a bit when i first was ill.
ck level test tells if there is any damage to muscles,higher the levels the more damage.
this can be due to many many many things other than als.
 

Zaphoon

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I've been told by my neuro that a slightly elevated ck rate is like having a slightly elevated temperature; lots and lots of probable causes but nothing to sweat over.
 

crystalkk

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Jules,

Are you on any medication? Things that are slightly elevated don't mean much, unless they continue to elevate.
 

Jules45

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I'm taking Synthroid for my Thyroid and blood pressure medicine. I'm also taking some Cymbalta.

My understanding is that you can have an elevated CPK (normal is <200, mine was 247 on 12.18.08, and 121 on 1.23.09) if you work out alot.

The neurologist said that his might be as high as 400 on any given day depending on his workout schedule.

I've been havingfatigue, minor cramping and "perceived" weakness, plus some weight loss that was attibuted to extreme anxiety.
 

crystalkk

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Jules,

Are your thyroid levels ok with the meds, your symptoms sound like hypothyroid.

Check to see if any of those meds could effect the liver.
 

GGKK

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I'm taking Synthroid for my Thyroid and blood pressure medicine. I'm also taking some Cymbalta.

My understanding is that you can have an elevated CPK (normal is <200, mine was 247 on 12.18.08, and 121 on 1.23.09) if you work out alot.

The neurologist said that his might be as high as 400 on any given day depending on his workout schedule.

I've been havingfatigue, minor cramping and "perceived" weakness, plus some weight loss that was attibuted to extreme anxiety.

Do you twitches?

Best wishes!
 

Jules45

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I've had some fasics in my but, triceps, and thighs.

EMG's and MRI's were good.

Neuro's said I had BFS.
 

ZenArcher

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I'm taking Synthroid for my Thyroid and blood pressure medicine. I'm also taking some Cymbalta.

So this all by itself could explain CPK and elevated liver enzymes.

My understanding is that you can have an elevated CPK (normal is <200, mine was 247 on 12.18.08, and 121 on 1.23.09) if you work out alot.

The neurologist said that his might be as high as 400 on any given day depending on his workout schedule.

In the words of a trained professional you had the equivalent of a 98.8 fever so what's the urgency?
 

lydia

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It is really too bad the nurse made that comment, for god knows what reason...but she has needlessly alarmed you. As everyone who has commented, a slightly elevated CK level is no big deal and from what I understand, inconclusive.....and even a hugely elevated one is indicative of *treatable* disorders; think in the 6 digits...

Relax...those clean EMGs should be a huge comfort.

Take care,

Lydia
 

lydia

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I also wanted to let you know Jules that I completely recognize the immediate and fearful reaction to that nurse's comment....here you are trying to believe or allow yourself to be convinced that you are indeed ok and then a representative of the medical field says something like that. All your efforts at rational thought are flushed down the drain. I remember meeting with my first neuro and after 15 minutes with me she scheduled a whole sh*t-load of tests and wrote my GP that she suspected MND. She scared the crap out of me. Now to her credit, she did not state her suspicions to me...I obtained a copy of her report and used it scare myself silly (but on a positive note, it spurred me to come out of hiding on the forum...silver lining, yahoo!). Thank goodness MND appears to be off the table for me, but that is beside the point. I feel your pain!

And as a side note about insensitive comments from nurses:

I was scheduling my follow-up with my GP. He said he wanted to see me in 3 weeks. The nurse (?) said he didn't have an opening for NINE weeks, was that ok? I said absolutely not, he wants me in 3 weeks, I want to be back in 3 weeks. She glanced at my paperwork, and I swear to god she said aloud, " well I don't see anything here that serious...can't you wait?" OMG.

I know this is petty...I know this is wrong....but I keep thinking of Brenda going back to her early neuro with her awful diagnosed (the neuro that said she was fine), and I think of my nurse....and I just want to *slap* her! (ahhh..slap the nurse...not Brenda :D)

Keep your head up (and you have to sing that line...)

Lydia
 

ptich

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Jules45, I am really curious about you mentioning elevated Bilurubin and Albumin. Did the neuro told you how they could be related to ALS ?
 

Jules45

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I don't think the Bilirubin had much relationship with ALS. I believe it's because my beer intake increased do to fears of ALS and self medicating myself by drinking more than I usually do.

The Albumin and Creatine Kinase (CPK) relationship is that it's protein in the blood that can be related to muscles dying which could tie back to ALS and muscles not getting the electrical inputs they need.

I'm not a doctor however, if that was the case you would think that if it got to the point where muscle fibers were dying that you would be experiencing some weakness.

I was also told by my GP and the Neuro that working out can cause elevated CPK because your tearing down muscle fibers and rebuilding them.
 
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