Sunday, September 13, 2009

So What Now?

So all in all, what is going on for those who don't know? Very confusing stuff, but last Dr. doesn't think it's Pompes, although, he said he could be wrong and will see with the muscle biopsy. What he does know is that whatever this is, there is a definite problem with glycogen and that although we may not know cause, we will continue to treat the disease process the same.

Dr. also said my problem could be due to a lot of things, other diseases out there that are rare and kinda tough to go into at this time, or a mitochondrial malfunction.

Now waiting on muscle biopsy. If biopsy + we will know for sure what I am dealing with, but won't know results for 2-6 wks. Praying for SOMETHING to show up.

If biopsy results normal, Dr. thinks problem is related to mitochondrial malfunction/mutation initially caused by a possible virus.

Needless to say, my high protein diet is much more strict, my exercise program is cut down in intensity. and I have been placed on more supplements/amino acids daily.

I am supposed to check in, in a couple weeks to let the NYC Dr. know how I am doing and go from there.

Will continue to persevere, have faith and see what God plans next.
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6 comments:

  1. AnonymousSeptember 14, 2009 at 7:13 PM

    i will be thinking and praying for you! love always!!!

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  2. GretchenSeptember 14, 2009 at 8:51 PM

    Liz, I had no idea you were suffering this way. I enjoyed reading about your journey mainly because of your incredible attitude and your decision to lean on and trust our loving God through this! I'll be praying for you and am looking forward to hearing a good prognosis. :)

    Rom. 8:28

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  3. lisa kingSeptember 14, 2009 at 9:06 PM

    Liz, I know it must be hard to open up about this...but I pray you find hope, encouragement, answers, & healing. You are an amazing woman.
    I don't think it is conincidence that 30 minutes before I read this I was doing my bible study lesson in John 9:1-3(when Jesus healed the man who was born blind). His disciples asked, "Jesus, who sinned this man or his parents, that he be born blind?" and Jesus answered--"Neither...but this happened so the work of God might be displayed in his life." Maybe God led you to document your journey in this blog publicly so that His work can be displayed in your life through healing. I pray it is so!!

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  4. Anne PilslSeptember 15, 2009 at 6:58 AM

    Liz! Wow! You are still the strongest woman I know and now you have leaned on God and not just your own strength makes you even stronger! We will be praying for you.
    Proverbs 3:5 "Trust in the Lord with all your heart, on your own intelligence rely not."

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  5. LizSeptember 15, 2009 at 10:37 AM

    WOW everyone! Thank you so much, you all give way too many props, really but thank you! I was really scared to put this out there :)

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  6. Brian SchaalSeptember 15, 2009 at 4:17 PM

    Thanks for the update! We have been thinking about you! Two to six weeks for a muscle biopsy slide interpretation? Are they sending it to India via boat for analysis? Really though, what a surprise that it may not be Pompes. That is a turn I didn't expect.

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