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Old 02-16-2013, 07:52 PM #11
jmount jmount is offline
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Hi Hankster,

My diagnosis took 5 neurologist about 5 months to confirm. I think most people with MG have suffered through lots of tests and doubts from co-workers, bosses and families that they are either crazy or lazy.

The tensilon test I had in February 1997 confirmed I had MG. After having a thymectomy in April 1997, I was in remission for almost 11 years. When I started having problems again in 2008, the symptoms weren't exactly the same and it took 4-5 neurologist another 8 months of various tests including single figer EMG nerve conduction tests to finally diagnose (after another tensilon test), that I was simply ouf of remission for my MG. Since the symptoms are often not diagnosed from the most common tests performed (as stated above), I would recommend you try and convice your doctor do the Tensilon test. It's generally done in an ER or hospital setting because of potential life threatening reactions (heart).

Today, I'm taking mestinon with some improvement in my fatigure and left leg weakness. Good luck!
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Old 02-17-2013, 02:08 PM #12
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Hi MG'ers. I have just noticed that my Creatine Kinase has been abnormally low. Upon Googling this, I see that this can be caused by drinking, but I have not been drinking much at all... maybe 2 drinks a month and it continues to decline. Has anyone else had the experience of a low CK? I had my EMG on Friday and it was beyond clear that my muscles had weakened immensely since my last EMG. These are the results and the normal range appears to be around 39-243 U/L. And it seems like if I was losing muscle, my CK would be going up. I have no idea what this means. Just wanted to see if any of you have had these results. Thanks.

22 U/L on 2/12/13
19 U/L on 1/19/13
23 U/L on 12/4/12
43 U/L on 3/31/12
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Old 02-17-2013, 09:36 PM #13
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My CK runs low. it was 37. I do not drink at all. The doctors did not seem to pay any attention to it. This link gives a lot of information on it: http://www.clinchem.org/content/44/5/905.full. I always figured mine was due to less physical activity.

kathie
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