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Posted 7/13/2011 7:11 PM (GMT 0)
My 6 yr old is being tested for things because she has muscle weakness. Weve been going to drs for a couple of years over this, and after a long wait were finally able to get into the geneticist this past Monday. The geneticist did a physical exam on both my daughter and myself since we share a lot of the same physical features. He has a strong suspicion of Myotonic Dystrophy, a form of Muscular Dystrophy. He says he doesnt think I have fibromyalgia and to consult with a Neurologist. Please odnt be offended when I say this, but I have never wanted to have Fibromyalgia so much in my life!!
If you pray, please send out a prayer for us. Thanks. We have to wait for insurance approval to do bloodwork and hen it will take 6 weeks to get the results since they have to send them out of state. So of course I will let you know. I will still post here as if I have Fibro though meanwhile if thats alright:)
Posted 7/13/2011 7:48 PM (GMT 0)
I'm so sorry to hear that you and your young daughter may have a form of muscular dystrophy. Both of you are in my prayers.

It is difficult not to worry, but if you can try to keep from thinking about it, it is best...stress only add to pain. I do understand how scared you must be. Some things we have no control over the outcome...thats when putting it in God's hands helps.

No matter what it turns out to be, you can get through it by taking one day at a time. We are all stronger than we think...I've learned this first hand.

Wishing you the best, sending gentle hugs and prayers. Please continue to post :)

hugs, Robin
Posted 7/13/2011 8:17 PM (GMT 0)
Thanks. Yes, Im just going to leave it to GOD for now.Worrying(although natural) doesnt cause things to have a different outcome.
Last November they thought my daughter had this and did an EMG and the neurologist said it was negative, but the geneticist thinks otherwise. meanwhile, he says he is going to consult with his solleages to see if they can come up with anything else. I am glad we finally have dsrs who dont want to brush everything aside.
I will bring up his suggestion to see a Neurologist when I go to my check-up on Monday.
Posted 7/13/2011 8:29 PM (GMT 0)
I will say a prayer for you too.And I know what it feels like to have dr.'s brush everything aside..it makes me kind of sad that alot(not all)are that way.I only have one really good doctor and he is a lung specialist for my other problem
Posted 7/13/2011 9:16 PM (GMT 0)
I don't blame you for hoping for Fibro.. it's considerably less scary than some of the other possible diagnoses out there! I hope you guys get some not-so-scary answers soon.
Posted 7/13/2011 9:40 PM (GMT 0)
Carlybob,

I am so sorry to hear this. And of course we still want you to post here. Do keep us updated on what is going on. You are in my thoughts and prayers.

Hugs, Karen
Posted 7/13/2011 10:45 PM (GMT 0)
Carlybob, I will say a prayer for you both good luck with everything....and I hope it's fibro...
Posted 7/14/2011 8:02 AM (GMT 0)
I hope things work out to the best. This is the time to pray and lean on your spiritual beliefs. I will be praying!
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