Getting Closer To An Answer

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Zaphoon

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I got some blood test results back today. The nurse phoned and said my cpk level and sed rate were elevated. The doctor is supposed to phone me when free to discuss what this may mean but the nurse said it had to do with muscles and inflamation. Huh, no kidding? For me, Gumby is a misnomer.

Okay, so it could be Polymyalgia Rheumatica or maybe Polymyositis? Hmmm...
(my thoughts - nothing official with those guesses)

Would either of those also explain the constant crampiness and twitching?

Zaphoon
 
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planningguy

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Although I can't answer your question, that's good news. Hopefully, this is the start of figuring the puzzle out.

Had they checked for this before? I was thinking about asking to rerun some of my earlier blood tests to see if anything new cropped up.

Robert
 

awieleba

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Z~

sounds like things are moving. I dont have a lot to add, but I wish you well.

april
 

Zaphoon

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Robert,

I believe they ran a cpk test at Washington U in St. Louis, back in July. I'm going to get copies of all of the tests, MRI's, EMG's, etc that have been done in the last 2 years. Thats about how long this stuff has been going on.

Z
 

lovelily

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Hi Kim....guess the doc won't be making a phone call tonight. ;) figures. Anyway, hopefully this will give them a direction to pursue. Have a good night.
 

lydia

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Hi Z,

I was wondering if when you had your CPK test if you were told to take it easy exercise-wise beforehand or no special directions or did they run you ragged and then test you? My doctor is setting up the latter type test for me soon.

I didn't realize this has been going on for 2 years for you...hope you get some answers soon.

Lydia
 

Zaphoon

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I missed a call from a government number and did a "reverse search" on it through the white pages website. Turns out, the call was from the V.A. in Arkansas. Probably the doc... (sigh...)

I feel crappy. Not to complain or anything but just a constant feeling of crappy. If I knew how to lower my elevated cpk and sed rate, I'd do it in a New York second! Well,
I'm sure most of you on this forum don't feel any better than I do. So, lets sing a song!

Zaphoon

P.S. Anyone have a favorite?
 

laurel

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Poly muscle stuff

I got some blood test results back today. The nurse phoned and said my cpk level and sed rate were elevated. The doctor is supposed to phone me when free to discuss what this may mean but the nurse said it had to do with muscles and inflamation. Huh, no kidding? For me, Gumby is a misnomer.

Okay, so it could be Polymyalgia Rheumatica or maybe Polymyositis? Hmmm...
(my thoughts - nothing official with those guesses)

Would either of those also explain the constant crampiness and twitching?

Zaphoon

Hi Kim,
I think Polyarteritis nodosa causes cramping and twitching. Can't think of a song to sing, but I won't be singing kum bah yah or Beth will get mad at me <g>. I am teasing you Beth, and we only tease those whom we love.
Laurel
 

rose

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Kim, my pick is Happy Christmas (War is Over) by John Lennon
 

wheeler641

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I was diagnosed with polymyalgia rheumatica, yes it also causes twitches all over, it is supposed to resolve itself in about 2 to 3 years in the meantime prednisone is the drug of choice, UGH. I too had a neg Ra, did they tell you what your sed rate is? My problem is even with the prednisone I do not seem to be getting any better, take care, margaret
 

lovelily

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I think 'Polyarteritis' would be a really big flag for the doctors. My grandmother had that. It was very fast moving.
 

sdsyd

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Hi Kim-

Wishing you luck in your search for answers. let the waiting begin (agaiN! ugh!)

Cindy
 

BethU

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Can't think of a song to sing, but I won't be singing kum bah yah or Beth will get mad at me

Actually, Laurel, I don't mind if you hum a few bars ... :) I'll just put my hands over my ears. lalalallala lalalalalalalalalalala
 

crystalkk

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kim,

That's great (anyone else would think we were nuts for saying that).

High cpk and sed rate could be nuermous things, treatable.

Yes, I know the feeling of feeling crappy all the time! it's not fun......
 

Zaphoon

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Thanks to all of you for your input. While I'm in a constant state of crampy-crappiness,
I've given thought to rewriting the lyrics to, "I Saw Mommy Kissng Santa Claus".

How about giving it kind of a San Fran - Philly flavor? "I Saw Daddy Kissing Santa..."

Z
 
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