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Question about kennedys and CPK levels
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Registered: 12-29-2013
Posts: 9
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Hi guys,
I am a 31 year old male from Melbourne Australia, I have been having neurological issues for 3.5 years without diagnosis

As far as symptoms I won't list them but I can say I have more than enough symptoms that would warrant a huge concern that I may have kennedys disease.

One question I wanted to ask was is CPK usually elevated in most diagnosis? Especially when symptoms are at a all time high? In kennedys disease.

As I have had my CPK tested a few times by neurologists once when I was inactive and it was fine and another time I was overdoing exercise and it was again completely normal, so anytime I bring up kennedys disease my neuros dismiss sending me for a test.

I have had emgs of limbs and first was thought to be possible mild chronic denervation but then 3 others reassured me that was not the case and I have clean emg..

So the fact I have a clean emg, no clinical weakness on neuro exam and a normal cpk they keep dismissing my want for a KD test.

So I guess my question is does a normal CPk blood test point away from KD?

Or should I keep pushing my drs? Due to my ongoing symptoms?
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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CPK is usually elevated in men with KD. Often it could be in the thousands. I had an elevated CPK for years and this was an indicator to my doctor that there was a problem. My CPK today is normal. Usually, the more strenuous the daily activities, the higher the CPK since it is one indicator of muscle wasting.

Because many symptoms cross over several types of conditions and because KD is often difficult to diagnose, the DNA test will confirm whether you have SBMA.

Is there any evidence of KD in your family (mother, uncles, grandparents, etc.)?
Registered: 12-29-2013
Posts: 9
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Thank you for replying Bruce.

I just spoke with my mother and her mother as well and no men in the family including my grandmothers brother and or my mums brother have kennedys disease...

So I would say it doesn't run in the family at all..

A long with the normal CPK does that point away from kennedys?

Pick tried to push for the kennedys blood test with a few neuros and they said it wasn't called for..

My concerns are my ongoing neurological issues and the fact I have gynecomastia..

But I'm guessing that could also be related to other things
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Trent, regarding previous generations, it probably wouldn't have been called KD at the time. Since doctors did not have a test for KD until 1996 or so, often it was diagnosed as ALS, MS, or a muscular distrophy disorder. For example, my uncle on my mother's side was wheelchair bound in his late 40s. Everyone said he had MS.

It is possible, but highly unlikely, that you are the first generation with the DNA defect.

Good luck on your search for an explanation.

This message has been edited. Last edited by: Bruce,
Registered: 12-29-2013
Posts: 9
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Thanks Bruce

Thank you for your reply and information, all the men had no neurological problems at all so if I did have it I would be the first in my family

So that would make very unlikely?
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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History of neurological problems would be a strong indicator, but absence would not eliminate KD. The genetic problem can be passed for multiple generations from female to female, and with bad luck could surface in a male now.


=================
email:rheitzman at gmail
Registered: 12-29-2013
Posts: 9
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Thanks for your reply...

So there is still a chance I could have it and should opt for the test? Why would my neurologists not want to just test me?

Is not having any family history of it and a normal CpK level a good sign?
Registered: 12-29-2013
Posts: 9
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Anyone on here from Melbourne Victoria? I want to get a test for Kennedy's and wanted to know what would be the quickest and easiest way ...

Most my specialist brush it off when I bring up a want for the test
Registered: 01-08-2013
Posts: 61
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My CPK (and all other blood levels) are in the normal range; CAG repeat of 43. There was no family history yet all of my mothers sons have been positively diagnosed
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